Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 if so could you pass on details of how to contact him, or > anyone else. I live in NI. Any help appreciated. Thanks bron >hi Bron, It is the same man yes, he is very good. If you go on the website www.tpa.uk.org.uk/ then you will find a list of locations and dates for his clinics. His number is 01883 623125. His name is Dr. Peatfield. Ring between 12 and 4 i think it is but not wednesdays or fridays. I'm sure he will be able to help you. Good luck. Lorraine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Hi Lorraine, Some time ago, I discovered by accident, that people with nasal polyps are aspirin sensitive and the same people are also tartrazine (the yellow dye) sensitive. In that category are many other dyes with similar properties. There was a recent report (TV) by a chap from Southampton University asking that manufacturers voluntarily remove these dyes, since the relevant legislation now has to come via Brussels. ie, it was a request pending change in the law. That being the case, I suspect that there are quite a few other substances that are in the 'iffy' category. If your son has any sensitivities that fall into the 'iffy' category, it's probably no surprise that he might have either an autoimmune problem or thyroid disease or both. If the adrenal insufficiency is one of the causes of allergic response, fixing the thyroid/adrenal problems should improve matters all round. best wishes Bob [[...and a year ago had nasal polyps removed and was due recently to have more surgery ..]] > > Hello Sheila and everyone, > > My name is Lorraine and I have joined the group because of my son > Callum. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Hi bron Dr Peatfield has his weekly clinics in Crawley, Surrey, and he has other clinics in other parts of the UK. Go to our website www.tpa-uk.org.uk and click on "Update - Dr peatfield's Metabolic Clinics" in the right hand column on the Home Page. you will need to scroll down. This is under TPA-UK News. You can see where he holds his clinics and who you should contact. You can speak to him first or email him to ask him exactly what tests he recommends before you see him - that way, you have all the test results when you have your consultation. His phone number is 01883 623125 - or his Email address is drbarrypeatfield@... Please be patient in waiting for a response as he is extremely busy. However, he is staying with me until the weekend and I will show him your email and if he has time, ask him to let me know what tests you should get and I will get back to you. luv - Sheila > >> > Thankyou for that Sheila. You are right about Dr Peatfield, after > seeing him Callum said to me "what a lovely man, he actually listened > and believed me". Such a refreshing change to our normal Dr, who just > seems to say, "i don't know Callum, what am i going to do with you?".> Tomorrow i see a new NHS Dr, i am going to ask him if he could test > Callum's growth hormones and blood sugar. > If anyone could suggest anything ask i might need to ask i would be > grateful. Thanks, Lorraine x>Hi not sure if this right place to post this but was looking for some advice on how to contact Dr Peatfield I am going to get ask for a thyroid test from my gp, due to infertility problems and low Basal Body Temp, always cold, cyst on overy. Was adviced by someone on Fertility Friends to get Dr Barry Durrant Peatfiel to do a salivary thyroid test and other tests. Just woundering if this is the person you refer to in your email, if so could you pass on details of how to contact him, or anyone else. I live in NI. Any help appreciated. Thanks bronNo virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.4/1566 - Release Date: 22/07/2008 06:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Hi, Ken! You're posting perfectly! welcome! for the first week or two, many people are quite swollen from surgery, so drinking can be a bit uncomfortable. This will improve as the swelling goes down and you heal. for most people, normal hunger returns within a few weeks, and they can eat normally again. then, hunger will be dimmed again after you reach a good fill. some people, especailly larger men, may lose well even without a fill for a good periodof time. for now, these things will help your intake: 1. hot or warm fluids go down easier than cold. Hot opens and relaxes the stomna, while cold closes it down. if you see no difference, either is fine. 2. Sip slowly - this means 3-4 small sips, then a rest of maybe 10 seconds for it to go thru. Our chugging and wolfing days must be over! 3. maybe 1/2 cup total fluid at a time - but every 30-60 minutes if you wish. for now, the swelling is limiting tgings. lateron, you'll be able to drink more at a sitting. If more (up to a cup0 causes NO sdisxcomfiort, it is ok. 4. Be sure you're getting a minimum of 64 oz a day - and ideally 80- 100 oz. Adequate hydration is always important for bandsters, but especailly in the post-op times. If you're on FULL liquids, Have things with good nutrition and calories - juices, milk, thin puddings, blended soups, quality protein drinks. forget sugar free things, for now. you need good calories to heal well 5. If you're on FULL liquids, as most people would be a week out, try hard to get good protein and fiber. Many foods, if pureed and thinned, will count as " full liquids " . Bean and ham soup like Chunky brand(pureed very smooth and then thinned so it would get thru a straw) is especially good, as it is full of protein and fiber. See the document in the files here called " foods and fluids for the first month. " for more ideas and suggestions. Do you know what band you have? This info will help us help you too - Glad you're here with us! You've done well already (although we are never trying to lose as fast as possible)and i predict you'll do vry very well! Sandy r > > Hello, Im not sure if I am doing this right so I guess this is kind of > a test. > > I was banded on October 22, 2008 so I am still on my first week of > liquids only. I was very pleased with myself that I was able to loose > 40 lbs. prior to the surgery and the goal set for me was only 25. > > I find that with the liquids I am very full and when I have not had > anything to eat/drink it almost hurts. Is this a normal feeling? > > Ken > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Thank you Sandy, good tips and today I start soft foods and VERY much looking forward to a poached egg. I had the regular band, not the realistic band installed. Thanks again for the tips.....knowing there is a support spot out there helps!! Cheers ken ________________________________ From: moonshadow.sandy <moonshadow.sandy@...> Sent: Sunday, October 26, 2008 9:36:18 AM Subject: Re: New Member Hi, Ken! You're posting perfectly! welcome! for the first week or two, many people are quite swollen from surgery, so drinking can be a bit uncomfortable. This will improve as the swelling goes down and you heal. for most people, normal hunger returns within a few weeks, and they can eat normally again. then, hunger will be dimmed again after you reach a good fill. some people, especailly larger men, may lose well even without a fill for a good periodof time. for now, these things will help your intake: 1. hot or warm fluids go down easier than cold. Hot opens and relaxes the stomna, while cold closes it down. if you see no difference, either is fine. 2. Sip slowly - this means 3-4 small sips, then a rest of maybe 10 seconds for it to go thru. Our chugging and wolfing days must be over! 3. maybe 1/2 cup total fluid at a time - but every 30-60 minutes if you wish. for now, the swelling is limiting tgings. lateron, you'll be able to drink more at a sitting. If more (up to a cup0 causes NO sdisxcomfiort, it is ok. 4. Be sure you're getting a minimum of 64 oz a day - and ideally 80- 100 oz. Adequate hydration is always important for bandsters, but especailly in the post-op times. If you're on FULL liquids, Have things with good nutrition and calories - juices, milk, thin puddings, blended soups, quality protein drinks. forget sugar free things, for now. you need good calories to heal well 5. If you're on FULL liquids, as most people would be a week out, try hard to get good protein and fiber. Many foods, if pureed and thinned, will count as " full liquids " . Bean and ham soup like Chunky brand(pureed very smooth and then thinned so it would get thru a straw) is especially good, as it is full of protein and fiber. See the document in the files here called " foods and fluids for the first month. " for more ideas and suggestions. Do you know what band you have? This info will help us help you too - Glad you're here with us! You've done well already (although we are never trying to lose as fast as possible)and i predict you'll do vry very well! Sandy r > > Hello, Im not sure if I am doing this right so I guess this is kind of > a test. > > I was banded on October 22, 2008 so I am still on my first week of > liquids only. I was very pleased with myself that I was able to loose > 40 lbs. prior to the surgery and the goal set for me was only 25. > > I find that with the liquids I am very full and when I have not had > anything to eat/drink it almost hurts. Is this a normal feeling? > > Ken > __________________________________________________________________ Canada Toolbar: Search from anywhere on the web, and bookmark your favourite sites. Download it now at http://ca.toolbar.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Hi, Ken - there are about 6 different sizes of the Inamed band, and it's important that you know which size band you have. each size has a different fill level range. Your doc should have given you a wallet card with this info, and more , on it. if you don't have one, do ask for one. It's important to have it's basic info, as well a your doc's contact number, with you in your wallet. It also will help us advise you, if we know what band size you have. Sandy r > > Thank you Sandy, good tips and today I start soft foods and VERY much looking forward to a poached egg. I had the regular band, not the realistic band installed. > > Thanks again for the tips.....knowing there is a support spot out there helps!! > > Cheers > ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2008 Report Share Posted December 11, 2008 Welcome le! I do hope you find the answers you seek regarding a CI. I too was born with bilateral sensorineural heraing loss, and learned the cause when I had my MRI in preparation for my CI in 2007. The cause is enlarged vestibular aqueduct syndrome. If you are interested you can google this to get more information. I've been fortunate that this has not had an effect on my balance. I've never been able to wear a HA in my right ear, so I always relied on my left for hearing. When my left continued to lose more hearing, I could no longer wear a bicross hearing aid, which limited even more what I could hear. I started pursuing ways to improve my hearing, and of course, the only option was a cochlear implant, but the question was, whether I qualified. Technically I did not qualify because I understood too well with my left ear alone (70% with single words), but the surgeon felt he could make a case for me since I was still in the workforce, and as an auditor (one who listens), hearing was very important in my line of work. Well, insurance company approved, I had the surgery 3/15/07, and after 18 months of daily use, I can understand with my CI ear alone 62% of single words and 85% of sentences, and with both ears working together, I understand about 94-98% sentences. So it definitely has helped me. I wish you the best of luck!! Keep us posted as you continue your journey. If you have any questions at all, we will be happy to answer them.  ________________________________ From: dani9185 <deafinitelyasl@...> Sent: Thursday, December 11, 2008 1:23:00 PM Subject: New Member Hello All: My name is le Im 23 years old. I was born with bilateral sensorineural hearing loss in September 2008 I lost all my hearing in my Right Ear which was my good ear. I am going to this new doctor to see if I qualify for a Cochlear Implant ASAP when he calls me back. I am struggling with my Left ear because my Right ear was better.. Having only one ear, is a hudge difference lately. I noticed my balance is off also. I joined this group because I want to learn more about your experiences. Hopefully soon I will be able to hear again. Smile* - le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2008 Report Share Posted December 12, 2008 Hi Dani, glad you found the forum....I knew you would. Val Blakely-co author of I'm All Ears www.imallears-book.blogspot.com http://www.deafkidscanhear.blogspot.com    Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Welcome Jessika, Where are you going to school? I run a Cochlear Implant Support Group and at our meeting yesterday we had a speaker who is a teacher of deaf children. She went to College/e School for the Deaf and studied in their auditory-oral program. Good to have you on board. Happy Hearing! Carol Boca Raton, FL N24C - Sprint then 3G left ear -12/11/01-upgraded to Freedom on 2/19/08 N Freedom- right ear- implanted 3/01/06 activated 4/6/06 New member Hello! My name is Jessika. I am currently a student, I am studying speech language pathology in school, I am a junior. The reason I joined this group is because I am currently enrolled in Speech reading training/ aural rehabilitation class. The focus of the class is cochlear implants. One of our assignments is to join an online group and keep a jounral of things we see and learn from others who are expereinced with cochlear implants and or the deaf community, hearing aids, ect. I would really appreciate it if anybody would like to share any inforamtion with me, stories, anything at all. I am excited to learn more about this and I think I will learn alot by joining this group. If any body has any questions for me, I will be more than happy. thanks so much! Jessika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Hi Jessika. I am a 73 year old Cochlear Corp. Freedom user. I was implanted in September 2005 so I have 3 years experience to date. The kind of information you desire can best be had by going to my blog at : http://irvscijourney.blogspot.com  I warn you that it is long as it covers a lot of time, but you will see one persons CI ups and downs. Many of us in the group have written blogs on our experiences, so I hope others will refer you to theirs. Good luck in you class.                  Irv in Ca. From: roxy_babe022002 <roxy_babe022002@...> Subject: New member Date: Monday, January 12, 2009, 2:13 PM Hello! My name is Jessika. I am currently a student, I am studying speech language pathology in school, I am a junior. The reason I joined this group is because I am currently enrolled in Speech reading training/ aural rehabilitation class. The focus of the class is cochlear implants. One of our assignments is to join an online group and keep a jounral of things we see and learn from others who are expereinced with cochlear implants and or the deaf community, hearing aids, ect. I would really appreciate it if anybody would like to share any inforamtion with me, stories, anything at all. I am excited to learn more about this and I think I will learn alot by joining this group. If any body has any questions for me, I will be more than happy. thanks so much! Jessika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 > > Welcome Jessika, > Where are you going to school? I run a Cochlear Implant Support Group and at our meeting yesterday we had a speaker who is a teacher of deaf children. She went to College/e School for the Deaf and studied in their auditory-oral program. > Good to have you on board. > Happy Hearing! > Carol > Boca Raton, FL > N24C - Sprint then 3G left ear -12/11/01-upgraded to Freedom on 2/19/08 > N Freedom- right ear- implanted 3/01/06 activated 4/6/06 > New member > > > Hello! > My name is Jessika. I am currently a student, I am studying speech > language pathology in school, I am a junior. The reason I joined this > group is because I am currently enrolled in Speech reading training/ > aural rehabilitation class. The focus of the class is cochlear > implants. One of our assignments is to join an online group and keep a > jounral of things we see and learn from others who are expereinced with > cochlear implants and or the deaf community, hearing aids, ect. I would > really appreciate it if anybody would like to share any inforamtion > with me, stories, anything at all. I am excited to learn more about > this and I think I will learn alot by joining this group. If any body > has any questions for me, I will be more than happy. thanks so much! > > Jessika > Thank you so much! I go to The University of Science and Arts of Oklahoma. It a very small school, but I love it, the deaf ed program here is very good, as well as the speech program! Thanks again. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 > > From: roxy_babe022002 <roxy_babe022002@...> > Subject: New member > > Date: Monday, January 12, 2009, 2:13 PM > > HI!! Thank you so much,this information will be excellent for my class, I really appreciate it and I am excited to learn more about your experience Jessika > > > > > Hello! > My name is Jessika. I am currently a student, I am studying speech > language pathology in school, I am a junior. The reason I joined this > group is because I am currently enrolled in Speech reading training/ > aural rehabilitation class. The focus of the class is cochlear > implants. One of our assignments is to join an online group and keep a > jounral of things we see and learn from others who are expereinced with > cochlear implants and or the deaf community, hearing aids, ect. I would > really appreciate it if anybody would like to share any inforamtion > with me, stories, anything at all. I am excited to learn more about > this and I think I will learn alot by joining this group. If any body > has any questions for me, I will be more than happy. thanks so much! > > Jessika > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 Jessika, People who are deaf/blind people on this Forum have told us that it would be helpful to them if you would put your reply at the beginning of the message to which you are replying rather than at the end. Happy Hearing! Carol Boca Raton, FL N24C - Sprint then 3G left ear -12/11/01-upgraded to Freedom on 2/19/08 N Freedom- right ear- implanted 3/01/06 activated 4/6/06 New member > > Date: Monday, January 12, 2009, 2:13 PM > > HI!! Thank you so much,this information will be excellent for my class, I really appreciate it and I am excited to learn more about your experience Jessika > > > > > Hello! > My name is Jessika. I am currently a student, I am studying speech > language pathology in school, I am a junior. The reason I joined this > group is because I am currently enrolled in Speech reading training/ > aural rehabilitation class. The focus of the class is cochlear > implants. One of our assignments is to join an online group and keep a > jounral of things we see and learn from others who are expereinced with > cochlear implants and or the deaf community, hearing aids, ect. I would > really appreciate it if anybody would like to share any inforamtion > with me, stories, anything at all. I am excited to learn more about > this and I think I will learn alot by joining this group. If any body > has any questions for me, I will be more than happy. thanks so much! > > Jessika > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2010 Report Share Posted February 15, 2010 Your post touched me...I had the same experience. My hearing issues started at 32. I am 53 now. I lived with diminished hearing in my right ear due to Meniere's disease and didn t think much about it until there was no usable hearing, which happened 10 years ago. At about the same time the Menieres started in my left ear! I still wear a powerful hearing aid in that ear but eventually my hearing will be gone in that ear too. I went to a very respected specialist in New York City when the hearing loss started in my left ear 10 years ago. Our goal was to preserve my hearing as long as possible which proved unsuccessful. At my very first appointment with him he promised me I would never be deaf because I could have an implant. He was right. I was approved for an implant last September for my right ear, and had the surgery in November and at the activation I could hear ! Now my comprehension is about 90% with just the implant and not the hearing aid on in my left ear.. So 90% on just the implanted ear! Of course there is variations in my hearing level in the envioroment I am in but I still hear very well even in noisy situations by changing the implant settings. I am still in the adjustment stage and my hearing should continue to improve for a while yet. I will go back next month for a hearing test and another mapping How did I handle the years before the implant? I tried to stay positive, trusted my doctor's promise, and lived one day at a time. I was also proactive. I did as much research as I could about my disease . I also thought it very useful to have some professional therapy as I am a firm believer in the mind body connection, as was my original doctor. I can honestly say I tried everything and have been guiding several people I know with Meniere's through the same process. Many of these people have had much success with some of the treatments that were unsuccessful for me which has been very gratifying. I also tried to remind myself of the positives in having this situation at this time. As you said there is so much available now like closed captioning, email, text messaging CAP tel that we are truly fortunate. It sounds like you are taking advantage of those resources already! Great! Being a teacher I understand your fear. My daughter had a middle school teacher who had severe hearing loss when my daughter had her as a teacher. My daughter said it was sometimes difficult for her but she handled her mistakes with humor and dignity. She had a cochlear implant a few years ago and she has successfully continued teaching a very tough school age. So be assured that there will be uncomfortable moments but it is possible to keep teaching and teaching quite successfully. My daughter's teacher found ,which I also  find, that if she kept her sense of humor and was matter of fact about the situation or her error in hearing something it puts everyone at ease. You will also become an excellent lip reader which will help immensely in your day to day life. Just let everyone know your situation including your students..It will gratify your heart to see how people respond. The people on this board are very helpful and compassionate . However, when it comes to technical advice about various implant maufacturers  I would suggest you trust your doctors and audiologist opinion and advice  because there is of course implant brand loyality anong the users themselves. Sometimes comments are made that are not always accurate. It's best to assess your own preferences and lifestyle with a professional. Most of the competitve brand advice is anecdotal. My best wishes to you ! I totally understand your fears but you will see how creative you can be.. Live for today! I shall keep my fingers crossed that your next screening for an implant is successful! Regina PS I just reread your post..your symptoms, tinnitus, hearing loss and dizziness are the symptoms of meniere's. Has your doctor assessed what is the underlying cause of your hearing loss. Fullness in the ears is also another symptom which usually happens right before the dizziness... ________________________________ From: chickmant <chickmant@...> Sent: Sun, February 14, 2010 9:20:36 PM Subject: new member  HI , my name is Teri and I am 48 years old. I started losing my hearing when I was about 35, but didn't notice it much. That's when I first noticed my tinnitus. Now , 13 years later, I am deaf in my left hear and wear a hearing aid in my right ear. The last two years I have experienced profound hearing loss in my right ear and I keep noticing that I can no longer hear things I could hear six months ago.I am getting more and more frustrated all the time. I really have trouble on the phone now and I am picking up a CAP tel phone on Tuesday. I was evaluated in August for a CI but did not qualify. I am going back for another evaluation in March. I try to stay positive by appreciating all the technology that is available to people with hearing loss and my family and friends are very supportive. I'm going to my first HOH support group next week, so that should be helpful. I've been looking for people with a similar experience to mine... hearing loss in middle age. It's very scary. I " m also a kindergarten teacher, so my hearing loss presents challenges at work. Anyways, I have lots to say, but I would love to hear from anyone having a similar experience. Also one question I have is that I also started experiencing some dizziness the last few months. could this prevent me from getting a CI? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2010 Report Share Posted February 15, 2010 Hi Teri, My experience is similar to yours. I started losing my hearing in my thirties, and am now 44. One ear went bad, then the other followed. I've been essentially deaf on the right for some time, but was able to get by. When my left ear tanked, it has made it near impossible to understand people at all. I'd worn 2 hearing aids for some time. I knew for quite a while that my hearing was going to continue to deteriorate before I'd be eligible for a cochlear implant. The waiting part wasn't easy. Just a couple of weeks ago, I had cochlear implant surgery. I haven't had it " activated " yet- so no hearing out of that ear yet. I'm a nursing instructor, so my hearing is an issue. Luckily enough, the department that I work in was able to find duties for me that don't require hearing (for the time being). Other people in the group may be able to suggest assisitive devises for you. I didn't have much luck with them, but I believe it's because I lost the low frequencies of my hearing and not the highs. Most people lose the high frequencies... Good luck! From: chickmant <chickmant@...> Subject: new member Date: Monday, February 15, 2010, 2:20 AM  HI , my name is Teri and I am 48 years old. I started losing my hearing when I was about 35, but didn't notice it much. That's when I first noticed my tinnitus. Now , 13 years later, I am deaf in my left hear and wear a hearing aid in my right ear. The last two years I have experienced profound hearing loss in my right ear and I keep noticing that I can no longer hear things I could hear six months ago.I am getting more and more frustrated all the time. I really have trouble on the phone now and I am picking up a CAP tel phone on Tuesday. I was evaluated in August for a CI but did not qualify. I am going back for another evaluation in March. I try to stay positive by appreciating all the technology that is available to people with hearing loss and my family and friends are very supportive. I'm going to my first HOH support group next week, so that should be helpful. I've been looking for people with a similar experience to mine... hearing loss in middle age. It's very scary. I " m also a kindergarten teacher, so my hearing loss presents challenges at work. Anyways, I have lots to say, but I would love to hear from anyone having a similar experience. Also one question I have is that I also started experiencing some dizziness the last few months. could this prevent me from getting a CI? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2010 Report Share Posted February 15, 2010 Hi Teri, Welcome to the group. If dizziness prevented people from getting CIs, lots of us wouldn't have them. Myself included. Teaching young children is especially difficult with a hearing loss, because their voices are so high pitched, and those are the ferquencies you lose first. Even with " normal age related " hearing loss. When you back for your evaluation in March, remember what MY first implant surgeon told me. " this is not a test you want to try to hard to pass " NOT that you should cheat. BUT if you think you hear something, but are not absolutely, positvely 100% sure you did hear it, then don't respond to it. We deafies tend to fill in the blanks and become quite good at guessing, even when we don't hear something. Or we've taken the tests so often that we know what word comes after " baseball, hotdog and airplane " So, do not guess if you didn't hear something. Good luck, HI , my name is Teri and I am 48 years old. I started losing my hearing when I was about 35, but didn't notice it much. That's when I first noticed my tinnitus. Now , 13 years later, I am deaf in my left hear and wear a hearing aid in my right ear. The last two years I have experienced profound hearing loss in my right ear and I keep noticing that I can no longer hear things I could hear six months ago.I am getting more and more frustrated all the time. I really have trouble on the phone now and I am picking up a CAP tel phone on Tuesday. I was evaluated in August for a CI but did not qualify. I am going back for another evaluation in March. I try to stay positive by appreciating all the technology that is available to people with hearing loss and my family and friends are very supportive. I'm going to my first HOH support group next week, so that should be helpful. I've been looking for people with a similar experience to mine... hearing loss in middle age. It's very scary. I " m also a kindergarten teacher, so my hearing loss presents challenges at work. Anyways, I have lots to say, but I would love to hear from anyone having a similar experience. Also one question I have is that I also started experiencing some dizziness the last few months. could this prevent me from getting a CI? ____________________________________________________________ Love Spell Click here to light up your life with a love spell! http://thirdpartyoffers.juno.com/TGL2141/c?cp=k2EQKY37z5Ooya30wQ4phAAAJ1CAYQG2fn\ ZWBLacCwlpBoaTAAYAAAAAAAAAAAAAAAAAAADNAAAAAAAAAAAAAAAAAAAARwAAAAA= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2010 Report Share Posted February 15, 2010 With Meniere's disease it is the low pitch sounds that start  the normal hearing loss progression..I continue to hear high pitch sounds in my left ear non implant ear even though my hearing loss is considered severe. So as I mentioned before in my post to you, you might want to check whether your symptoms indicate Meniere's Not all hearing loss starts with loss to high pitch sounds. Regina ________________________________ From: Nucleus24 <nucleus24@...> Sent: Mon, February 15, 2010 6:40:42 PM Subject: Re:new member  Hi Teri, Welcome to the group. If dizziness prevented people from getting CIs, lots of us wouldn't have them. Myself included. Teaching young children is especially difficult with a hearing loss, because their voices are so high pitched, and those are the ferquencies you lose first. Even with " normal age related " hearing loss. When you back for your evaluation in March, remember what MY first implant surgeon told me. " this is not a test you want to try to hard to pass " NOT that you should cheat. BUT if you think you hear something, but are not absolutely, positvely 100% sure you did hear it, then don't respond to it. We deafies tend to fill in the blanks and become quite good at guessing, even when we don't hear something. Or we've taken the tests so often that we know what word comes after " baseball, hotdog and airplane " So, do not guess if you didn't hear something. Good luck, HI , my name is Teri and I am 48 years old. I started losing my hearing when I was about 35, but didn't notice it much. That's when I first noticed my tinnitus. Now , 13 years later, I am deaf in my left hear and wear a hearing aid in my right ear. The last two years I have experienced profound hearing loss in my right ear and I keep noticing that I can no longer hear things I could hear six months ago.I am getting more and more frustrated all the time. I really have trouble on the phone now and I am picking up a CAP tel phone on Tuesday. I was evaluated in August for a CI but did not qualify. I am going back for another evaluation in March. I try to stay positive by appreciating all the technology that is available to people with hearing loss and my family and friends are very supportive. I'm going to my first HOH support group next week, so that should be helpful. I've been looking for people with a similar experience to mine... hearing loss in middle age. It's very scary. I " m also a kindergarten teacher, so my hearing loss presents challenges at work. Anyways, I have lots to say, but I would love to hear from anyone having a similar experience. Also one question I have is that I also started experiencing some dizziness the last few months. could this prevent me from getting a CI? ____________ _________ _________ _________ _________ _________ _ Love Spell Click here to light up your life with a love spell! http://thirdpartyof fers.juno. com/TGL2141/ c?cp=k2EQKY37z5O oya30wQ4phAAAJ1C AYQG2fnZWBLacCwl pBoaTAAYAAAAAAAA AAAAAAAAAAADNAAA AAAAAAAAAAAAAAAA ARwAAAAA= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2010 Report Share Posted February 15, 2010 Dear Regina, I cannot thank you enough for your reply. I am actually crying right now. I have been desperate to talk to people with this experience and reading your reply was such a comfort to me. As understanding as my family and friends have been, it's impossible for them to understand what this is like. About four years ago, when I went to yet another audiologist for answers, he had me go through extensive testing and although he never said I officially had Meniere's Disease, he suggested that I go on the Meniere's Disease diet. Up until then, I had only had two mild vertigo episodes, but now I am experiencing dizziness quite often. Usually if I bend over, get out of bed,etc. So I started reading up on Meniere's and I believe I do have that. I just loved reading about your success with your implant. That is just fantastic! That gives me such hope. I was wondering what music sounds like with your implant. That is one thing that gets me sad. Music sounds so distorted. I can listen to a familiar CD, where I know all of the lyrics and I can tell what song is playing. But if I try to listen to the radio, it's very frustrating. Six months ago, I could still listen to my favorite talk radio show on the way to work, but not anymore. Also, did you ever have an FM system? I got one about a year and a half ago, when I got a new hearing aid. It sounded like it was going to be so wonderful. But , for me it hasn't helped much. I tried using it at restaurants and even at my own dinner table, but it doesn't help much. One other question I have has to do with going to musicals or plays. My friend invited me to go see the musical , Wicked. I thought if I got the CD and learned the lyrics ahead of time, by reading them , that would make it more enjoyable. Then I found out that the theater has I Caption, which sounds like a hand held device that shows captions of the dialogue. Do you know anything about this? Thank you so much for telling me about your daughter's teacher. That really made me feel better. My students know that I need to see their lips when they speak to me. I have made some pretty funny mistakes when it comes to interpreting what they say sometimes. I do have to laugh about it. ONe thing I haven't done is I haven't told the parents of my students about my hearing loss. My principal and my co-workers know. I was worried that the parents would be concerned that their child's teacher is hearing impaired. I know I need to get over this. But some things are hard. I am so glad I joined this group. I will take one day at a time. Thank you so much. Teri ________________________________ From: Regina Marulli <rmarulli@...> Sent: Mon, February 15, 2010 6:45:01 AM Subject: Re: new member Your post touched me...I had the same experience. My hearing issues started at 32. I am 53 now. I lived with diminished hearing in my right ear due to Meniere's disease and didn t think much about it until there was no usable hearing, which happened 10 years ago. At about the same time the Menieres started in my left ear! I still wear a powerful hearing aid in that ear but eventually my hearing will be gone in that ear too. I went to a very respected specialist in New York City when the hearing loss started in my left ear 10 years ago. Our goal was to preserve my hearing as long as possible which proved unsuccessful. At my very first appointment with him he promised me I would never be deaf because I could have an implant. He was right. I was approved for an implant last September for my right ear, and had the surgery in November and at the activation I could hear ! Now my comprehension is about 90% with just the implant and not the hearing aid on in my left ear.. So 90% on just the implanted ear! Of course there is variations in my hearing level in the envioroment I am in but I still hear very well even in noisy situations by changing the implant settings. I am still in the adjustment stage and my hearing should continue to improve for a while yet. I will go back next month for a hearing test and another mapping How did I handle the years before the implant? I tried to stay positive, trusted my doctor's promise, and lived one day at a time. I was also proactive. I did as much research as I could about my disease . I also thought it very useful to have some professional therapy as I am a firm believer in the mind body connection, as was my original doctor. I can honestly say I tried everything and have been guiding several people I know with Meniere's through the same process. Many of these people have had much success with some of the treatments that were unsuccessful for me which has been very gratifying. I also tried to remind myself of the positives in having this situation at this time. As you said there is so much available now like closed captioning, email, text messaging CAP tel that we are truly fortunate. It sounds like you are taking advantage of those resources already! Great! Being a teacher I understand your fear. My daughter had a middle school teacher who had severe hearing loss when my daughter had her as a teacher. My daughter said it was sometimes difficult for her but she handled her mistakes with humor and dignity. She had a cochlear implant a few years ago and she has successfully continued teaching a very tough school age. So be assured that there will be uncomfortable moments but it is possible to keep teaching and teaching quite successfully. My daughter's teacher found ,which I also find, that if she kept her sense of humor and was matter of fact about the situation or her error in hearing something it puts everyone at ease. You will also become an excellent lip reader which will help immensely in your day to day life. Just let everyone know your situation including your students..It will gratify your heart to see how people respond. The people on this board are very helpful and compassionate . However, when it comes to technical advice about various implant maufacturers I would suggest you trust your doctors and audiologist opinion and advice because there is of course implant brand loyality anong the users themselves. Sometimes comments are made that are not always accurate. It's best to assess your own preferences and lifestyle with a professional. Most of the competitve brand advice is anecdotal. My best wishes to you ! I totally understand your fears but you will see how creative you can be.. Live for today! I shall keep my fingers crossed that your next screening for an implant is successful! Regina PS I just reread your post..your symptoms, tinnitus, hearing loss and dizziness are the symptoms of meniere's. Has your doctor assessed what is the underlying cause of your hearing loss. Fullness in the ears is also another symptom which usually happens right before the dizziness... ____________ _________ _________ __ From: chickmant <chickmant (DOT) com> groups (DOT) com Sent: Sun, February 14, 2010 9:20:36 PM Subject: new member HI , my name is Teri and I am 48 years old. I started losing my hearing when I was about 35, but didn't notice it much. That's when I first noticed my tinnitus. Now , 13 years later, I am deaf in my left hear and wear a hearing aid in my right ear. The last two years I have experienced profound hearing loss in my right ear and I keep noticing that I can no longer hear things I could hear six months ago.I am getting more and more frustrated all the time. I really have trouble on the phone now and I am picking up a CAP tel phone on Tuesday. I was evaluated in August for a CI but did not qualify. I am going back for another evaluation in March. I try to stay positive by appreciating all the technology that is available to people with hearing loss and my family and friends are very supportive. I'm going to my first HOH support group next week, so that should be helpful. I've been looking for people with a similar experience to mine... hearing loss in middle age. It's very scary. I " m also a kindergarten teacher, so my hearing loss presents challenges at work. Anyways, I have lots to say, but I would love to hear from anyone having a similar experience. Also one question I have is that I also started experiencing some dizziness the last few months. could this prevent me from getting a CI? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2010 Report Share Posted February 15, 2010 Dear , Thank you so much for your reply. I am so anxious to hear about your activation. How was your surgery? Are you back at work? The waiting part is so difficult, just like you said. I feel like I'm in an in- between stage, where I'm not quite deaf enough for the implant, but the deafness I have makes it really difficult out in the world. I will be looking forward to reading about your activation. Good luck to you! Sincerely, Teri ________________________________ From: Van Slyke <tcvanslyke@...> Sent: Mon, February 15, 2010 6:49:18 AM Subject: Re: new member Hi Teri, My experience is similar to yours. I started losing my hearing in my thirties, and am now 44. One ear went bad, then the other followed. I've been essentially deaf on the right for some time, but was able to get by. When my left ear tanked, it has made it near impossible to understand people at all. I'd worn 2 hearing aids for some time. I knew for quite a while that my hearing was going to continue to deteriorate before I'd be eligible for a cochlear implant. The waiting part wasn't easy. Just a couple of weeks ago, I had cochlear implant surgery. I haven't had it " activated " yet- so no hearing out of that ear yet. I'm a nursing instructor, so my hearing is an issue. Luckily enough, the department that I work in was able to find duties for me that don't require hearing (for the time being). Other people in the group may be able to suggest assisitive devises for you. I didn't have much luck with them, but I believe it's because I lost the low frequencies of my hearing and not the highs. Most people lose the high frequencies. .. Good luck! From: chickmant <chickmant (DOT) com> Subject: new member groups (DOT) com Date: Monday, February 15, 2010, 2:20 AM HI , my name is Teri and I am 48 years old. I started losing my hearing when I was about 35, but didn't notice it much. That's when I first noticed my tinnitus. Now , 13 years later, I am deaf in my left hear and wear a hearing aid in my right ear. The last two years I have experienced profound hearing loss in my right ear and I keep noticing that I can no longer hear things I could hear six months ago.I am getting more and more frustrated all the time. I really have trouble on the phone now and I am picking up a CAP tel phone on Tuesday. I was evaluated in August for a CI but did not qualify. I am going back for another evaluation in March. I try to stay positive by appreciating all the technology that is available to people with hearing loss and my family and friends are very supportive. I'm going to my first HOH support group next week, so that should be helpful. I've been looking for people with a similar experience to mine... hearing loss in middle age. It's very scary. I " m also a kindergarten teacher, so my hearing loss presents challenges at work. Anyways, I have lots to say, but I would love to hear from anyone having a similar experience. Also one question I have is that I also started experiencing some dizziness the last few months. could this prevent me from getting a CI? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Hi Terri! I apologize for not responding sooner. I had some health issues with my Mom that has taken up much of my time. I 'm really glad I gave you a bit of relief coping with this situation. I'll try and answer your questions in bold below and also make comments on what you wrote. ________________________________ From: Teri Chickman <chickmant@...> Sent: Tue, February 16, 2010 12:47:12 AM Subject: Re: new member  Dear Regina, I cannot thank you enough for your reply. I am actually crying right now. I have been desperate to talk to people with this experience and reading your reply was such a comfort to me. As understanding as my family and friends have been, it's impossible for them to understand what this is like. I know what you mean..as understanding as people try to be it is impossible to understand all the day to day issues we deal with. Thats why this board is so useful I think. About four years ago, when I went to yet another audiologist for answers, he had me go through extensive testing and although he never said I officially had Meniere's Disease, he suggested that I go on the Meniere's Disease diet. Up until then, I had only had two mild vertigo episodes, but now I am experiencing dizziness quite often. Usually if I bend over, get out of bed,etc. So I started reading up on Meniere's and I believe I do have that. I f you are interested in finding out whether you have Meniere's disease, there is a web site www.veda.org (vesibular disorder association) that lists professionals by states that specialize in balance and vestibular disorders. There are sophisticated non invasive tests that can be done to diagnose if you have Meniere's or another vestibular disorder. If you live near Philly or Baltimore or Sarasota Fla I can give you names of specialists I have used. I just loved reading about your success with your implant. That is just fantastic! That gives me such hope. I was wondering what music sounds like with your implant. I was pleasantly surprised tho hear music that is not off key! I had spoken with another cochlear implant user who said she heard music but it is off key. I do have trouble with some lyrics but I always did even when I could hear well! The first music that sounded good was familiar songs. Now I am hearing commercial jingles on TV ..I do have trouble with loud music that' s sometimes played in movies ..It is very loud..but I just turn down the implant.That is one thing that gets me sad. Music sounds so distorted. I can listen to a familiar CD, where I know all of the lyrics and I can tell what song is playing. But if I try to listen to the radio, it's very frustrating. Six months ago, I could still listen to my favorite talk radio show on the way to work, but not anymore. Talk radio is how I practice hearing with my implant. I also drove 8 hours home yesterday and listened to a book on tape and understood what was going on.NPR is a great radio station because the announcers talk clearly as did the book on tape narrarator. I have trouble hearing accents still. Also, did you ever have an FM system? I got one about a year and a half ago, when I got a new hearing aid. It sounded like it was going to be so wonderful. But , for me it hasn't helped much. I have one and because my hearing with the meniere s fluctuated I did not have much success when I used it with the hearing aid. I have not tried it with the implant yet although the audiologist says it can be programmed to work .One on one in a restaurant was okay when my companion sat across from me with the FM around their neck. But forget putting it in the middle of the table with a group of people ..not good. The voices were jumbled to me I tried using it at restaurants and even at my own dinner table, but it doesn't help much. One other question I have has to do with going to musicals or plays. My friend invited me to go see the musical , Wicked. I thought if I got the CD and learned the lyrics ahead of time, by reading them , that would make it more enjoyable. Then I found out that the theater has I Caption, which sounds like a hand held device that shows captions of the dialogue. Do you know anything about this? I don't know too much about ICAP but I am going to research it. My daughter is at NYU and can get discount Broadway tickets thru the school. I love Broadway but it is very expensive and I missed so much at least before the implant it wasn t worth it. I'll let you know what I find out. Thank you so much for telling me about your daughter's teacher. That really made me feel better. My students know that I need to see their lips when they speak to me. I have made some pretty funny mistakes when it comes to interpreting what they say sometimes. I do have to laugh about it. ONe thing I haven't done is I haven't told the parents of my students about my hearing loss. My principal and my co-workers know. I was worried that the parents would be concerned that their child's teacher is hearing impaired. I know I need to get over this. But some things are hard. I have the email address of my daughter's teacher. My husband is an orthodontist and she recently was a patient of his . Would you like me to e mail her to ask her if she would be willing to share teaching tips with you? As far as the parents go I would bet many know already thru their children. Maybe you should talk with your principal and discuss a strategy on telling the parents. I remember Alyssa's (my daughter) teacher was matter a fact about her hearing loss on back to school night and announced it to all the parents. (this was way before her implant) My reaction was wow, what a brave woman! I am so glad I joined this group. I will take one day at a time. I am so glad you did too..you are not alone in this situation Regina PS it you want to converse privately my email address is rmarulli@... Thank you so much. Teri ____________ _________ _________ __ From: Regina Marulli <rmarulli (DOT) com> groups (DOT) com Sent: Mon, February 15, 2010 6:45:01 AM Subject: Re: new member Your post touched me...I had the same experience. My hearing issues started at 32. I am 53 now. I lived with diminished hearing in my right ear due to Meniere's disease and didn t think much about it until there was no usable hearing, which happened 10 years ago. At about the same time the Menieres started in my left ear! I still wear a powerful hearing aid in that ear but eventually my hearing will be gone in that ear too. I went to a very respected specialist in New York City when the hearing loss started in my left ear 10 years ago. Our goal was to preserve my hearing as long as possible which proved unsuccessful. At my very first appointment with him he promised me I would never be deaf because I could have an implant. He was right. I was approved for an implant last September for my right ear, and had the surgery in November and at the activation I could hear ! Now my comprehension is about 90% with just the implant and not the hearing aid on in my left ear.. So 90% on just the implanted ear! Of course there is variations in my hearing level in the envioroment I am in but I still hear very well even in noisy situations by changing the implant settings. I am still in the adjustment stage and my hearing should continue to improve for a while yet. I will go back next month for a hearing test and another mapping How did I handle the years before the implant? I tried to stay positive, trusted my doctor's promise, and lived one day at a time. I was also proactive. I did as much research as I could about my disease . I also thought it very useful to have some professional therapy as I am a firm believer in the mind body connection, as was my original doctor. I can honestly say I tried everything and have been guiding several people I know with Meniere's through the same process. Many of these people have had much success with some of the treatments that were unsuccessful for me which has been very gratifying. I also tried to remind myself of the positives in having this situation at this time. As you said there is so much available now like closed captioning, email, text messaging CAP tel that we are truly fortunate. It sounds like you are taking advantage of those resources already! Great! Being a teacher I understand your fear. My daughter had a middle school teacher who had severe hearing loss when my daughter had her as a teacher. My daughter said it was sometimes difficult for her but she handled her mistakes with humor and dignity. She had a cochlear implant a few years ago and she has successfully continued teaching a very tough school age. So be assured that there will be uncomfortable moments but it is possible to keep teaching and teaching quite successfully. My daughter's teacher found ,which I also find, that if she kept her sense of humor and was matter of fact about the situation or her error in hearing something it puts everyone at ease. You will also become an excellent lip reader which will help immensely in your day to day life. Just let everyone know your situation including your students..It will gratify your heart to see how people respond. The people on this board are very helpful and compassionate . However, when it comes to technical advice about various implant maufacturers I would suggest you trust your doctors and audiologist opinion and advice because there is of course implant brand loyality anong the users themselves. Sometimes comments are made that are not always accurate. It's best to assess your own preferences and lifestyle with a professional. Most of the competitve brand advice is anecdotal. My best wishes to you ! I totally understand your fears but you will see how creative you can be.. Live for today! I shall keep my fingers crossed that your next screening for an implant is successful! Regina PS I just reread your post..your symptoms, tinnitus, hearing loss and dizziness are the symptoms of meniere's. Has your doctor assessed what is the underlying cause of your hearing loss. Fullness in the ears is also another symptom which usually happens right before the dizziness... ____________ _________ _________ __ From: chickmant <chickmant (DOT) com> groups (DOT) com Sent: Sun, February 14, 2010 9:20:36 PM Subject: new member HI , my name is Teri and I am 48 years old. I started losing my hearing when I was about 35, but didn't notice it much. That's when I first noticed my tinnitus. Now , 13 years later, I am deaf in my left hear and wear a hearing aid in my right ear. The last two years I have experienced profound hearing loss in my right ear and I keep noticing that I can no longer hear things I could hear six months ago.I am getting more and more frustrated all the time. I really have trouble on the phone now and I am picking up a CAP tel phone on Tuesday. I was evaluated in August for a CI but did not qualify. I am going back for another evaluation in March. I try to stay positive by appreciating all the technology that is available to people with hearing loss and my family and friends are very supportive. I'm going to my first HOH support group next week, so that should be helpful. I've been looking for people with a similar experience to mine... hearing loss in middle age. It's very scary. I " m also a kindergarten teacher, so my hearing loss presents challenges at work. Anyways, I have lots to say, but I would love to hear from anyone having a similar experience. Also one question I have is that I also started experiencing some dizziness the last few months. could this prevent me from getting a CI? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Dear Regina, I know how you feel with what your going thru as far as Mineares Disease. I woke up on April the 28th of 2009 totally deaf in both ears or darn close. They said I have Sudden Profound Sensenoreal Hearing Loss, a month after that I was diagnosed with Minears, a month after that I was diagnosed with AIED (AutoImmune Inner Ear Disease) and to add to everything, I found out I had an Arachnoid Cyst in the lower part of my brain. I had my first Mineares attack and it wasn't severe but in July of last year I was up North staying since I didn't need to be in the valley anymore for business. I was in Flagstaff and all of a sudden I couldn't walk, was throwing up, felt like I had 1000lbs on me, the house is 22 miles from Flag. and I was driven home and helped up the stairs. I went to bed thinking I will be asleep for a couple of hours and the next thing I knew it was 12 hours later. I had the second major one the second day. I woke up at 02:30 and knew I couldn't get ahold of my Dr. so I started browsing the web and came across a Dr. Hain in Chicago from NorthWestern University. I took a chance and emailed him, I received an email back from him about three hours later and was told with everything that happened to me so suddenly that it's very rare. I was sitting on the deck of my mothers place after reading that email. Joyce came outside and wrote on a notepad to ask what was wrong, I just started crying. I am not the type of guy for being 40 to admit to crying but have learned since all of this has happened I really don't care what people think anymore. I have so many journals from my journey since this happened that I want to write a book. There is a little lady in myhearingloss.org on Monday that is a moderator and she was implanted in both ears. I wrote her after getting that email and told her about things. She said that after she had her implants she had Mineares even worse for the first three years and had to go thru physical therapy. I hope I don't have to do that and pray I don't but I at least know what to expect as a worse case scenario. Just keep asking people in here as for that's what I have been doing. Gain all the knoweledge and assistance since thats why they have these groups. My business is shut down, my income was cut by 3/4's but i'm still alive and have my mother, brother, sister, a good close friend and the people here as well as in HLAA. If you ever get the attacks and just want someone to talk to then I am here. I had two more about two weeks ago and was in bed for two days. I guess you can say I just got use to it. The ringing non stop in the ears doesn't help much either and drives me nuts but again, getting use to things. Try to stay away from stress. Alot of movement as well from what I have found out. You'll get thru it, P.S. I don't write the best letters unless I am doing a sales call in dedicated logistics but of course don't do that anymore either. Pardon if it's not done perfect. ________________________________ From: Regina Marulli <rmarulli@...> Sent: Sat, February 20, 2010 10:32:05 AM Subject: Re: new member  Hi Terri! I apologize for not responding sooner. I had some health issues with my Mom that has taken up much of my time. I 'm really glad I gave you a bit of relief coping with this situation. I'll try and answer your questions in bold below and also make comments on what you wrote. ____________ _________ _________ __ From: Teri Chickman <chickmant (DOT) com> groups (DOT) com Sent: Tue, February 16, 2010 12:47:12 AM Subject: Re: new member  Dear Regina, I cannot thank you enough for your reply. I am actually crying right now. I have been desperate to talk to people with this experience and reading your reply was such a comfort to me. As understanding as my family and friends have been, it's impossible for them to understand what this is like. I know what you mean..as understanding as people try to be it is impossible to understand all the day to day issues we deal with. Thats why this board is so useful I think. About four years ago, when I went to yet another audiologist for answers, he had me go through extensive testing and although he never said I officially had Meniere's Disease, he suggested that I go on the Meniere's Disease diet. Up until then, I had only had two mild vertigo episodes, but now I am experiencing dizziness quite often. Usually if I bend over, get out of bed,etc. So I started reading up on Meniere's and I believe I do have that. I f you are interested in finding out whether you have Meniere's disease, there is a web site www.veda.org (vesibular disorder association) that lists professionals by states that specialize in balance and vestibular disorders. There are sophisticated non invasive tests that can be done to diagnose if you have Meniere's or another vestibular disorder. If you live near Philly or Baltimore or Sarasota Fla I can give you names of specialists I have used. I just loved reading about your success with your implant. That is just fantastic! That gives me such hope. I was wondering what music sounds like with your implant. I was pleasantly surprised tho hear music that is not off key! I had spoken with another cochlear implant user who said she heard music but it is off key. I do have trouble with some lyrics but I always did even when I could hear well! The first music that sounded good was familiar songs. Now I am hearing commercial jingles on TV ..I do have trouble with loud music that' s sometimes played in movies ..It is very loud..but I just turn down the implant.That is one thing that gets me sad. Music sounds so distorted. I can listen to a familiar CD, where I know all of the lyrics and I can tell what song is playing. But if I try to listen to the radio, it's very frustrating. Six months ago, I could still listen to my favorite talk radio show on the way to work, but not anymore. Talk radio is how I practice hearing with my implant. I also drove 8 hours home yesterday and listened to a book on tape and understood what was going on.NPR is a great radio station because the announcers talk clearly as did the book on tape narrarator. I have trouble hearing accents still. Also, did you ever have an FM system? I got one about a year and a half ago, when I got a new hearing aid. It sounded like it was going to be so wonderful. But , for me it hasn't helped much. I have one and because my hearing with the meniere s fluctuated I did not have much success when I used it with the hearing aid. I have not tried it with the implant yet although the audiologist says it can be programmed to work .One on one in a restaurant was okay when my companion sat across from me with the FM around their neck. But forget putting it in the middle of the table with a group of people ..not good. The voices were jumbled to me I tried using it at restaurants and even at my own dinner table, but it doesn't help much. One other question I have has to do with going to musicals or plays. My friend invited me to go see the musical , Wicked. I thought if I got the CD and learned the lyrics ahead of time, by reading them , that would make it more enjoyable. Then I found out that the theater has I Caption, which sounds like a hand held device that shows captions of the dialogue. Do you know anything about this? I don't know too much about ICAP but I am going to research it. My daughter is at NYU and can get discount Broadway tickets thru the school. I love Broadway but it is very expensive and I missed so much at least before the implant it wasn t worth it. I'll let you know what I find out. Thank you so much for telling me about your daughter's teacher. That really made me feel better. My students know that I need to see their lips when they speak to me. I have made some pretty funny mistakes when it comes to interpreting what they say sometimes. I do have to laugh about it. ONe thing I haven't done is I haven't told the parents of my students about my hearing loss. My principal and my co-workers know. I was worried that the parents would be concerned that their child's teacher is hearing impaired. I know I need to get over this. But some things are hard. I have the email address of my daughter's teacher. My husband is an orthodontist and she recently was a patient of his . Would you like me to e mail her to ask her if she would be willing to share teaching tips with you? As far as the parents go I would bet many know already thru their children. Maybe you should talk with your principal and discuss a strategy on telling the parents. I remember Alyssa's (my daughter) teacher was matter a fact about her hearing loss on back to school night and announced it to all the parents. (this was way before her implant) My reaction was wow, what a brave woman! I am so glad I joined this group. I will take one day at a time. I am so glad you did too..you are not alone in this situation Regina PS it you want to converse privately my email address is rmarulli (DOT) com Thank you so much. Teri ____________ _________ _________ __ From: Regina Marulli <rmarulli (DOT) com> groups (DOT) com Sent: Mon, February 15, 2010 6:45:01 AM Subject: Re: new member Your post touched me...I had the same experience. My hearing issues started at 32. I am 53 now. I lived with diminished hearing in my right ear due to Meniere's disease and didn t think much about it until there was no usable hearing, which happened 10 years ago. At about the same time the Menieres started in my left ear! I still wear a powerful hearing aid in that ear but eventually my hearing will be gone in that ear too. I went to a very respected specialist in New York City when the hearing loss started in my left ear 10 years ago. Our goal was to preserve my hearing as long as possible which proved unsuccessful. At my very first appointment with him he promised me I would never be deaf because I could have an implant. He was right. I was approved for an implant last September for my right ear, and had the surgery in November and at the activation I could hear ! Now my comprehension is about 90% with just the implant and not the hearing aid on in my left ear.. So 90% on just the implanted ear! Of course there is variations in my hearing level in the envioroment I am in but I still hear very well even in noisy situations by changing the implant settings. I am still in the adjustment stage and my hearing should continue to improve for a while yet. I will go back next month for a hearing test and another mapping How did I handle the years before the implant? I tried to stay positive, trusted my doctor's promise, and lived one day at a time. I was also proactive. I did as much research as I could about my disease . I also thought it very useful to have some professional therapy as I am a firm believer in the mind body connection, as was my original doctor. I can honestly say I tried everything and have been guiding several people I know with Meniere's through the same process. Many of these people have had much success with some of the treatments that were unsuccessful for me which has been very gratifying. I also tried to remind myself of the positives in having this situation at this time. As you said there is so much available now like closed captioning, email, text messaging CAP tel that we are truly fortunate. It sounds like you are taking advantage of those resources already! Great! Being a teacher I understand your fear. My daughter had a middle school teacher who had severe hearing loss when my daughter had her as a teacher. My daughter said it was sometimes difficult for her but she handled her mistakes with humor and dignity. She had a cochlear implant a few years ago and she has successfully continued teaching a very tough school age. So be assured that there will be uncomfortable moments but it is possible to keep teaching and teaching quite successfully. My daughter's teacher found ,which I also find, that if she kept her sense of humor and was matter of fact about the situation or her error in hearing something it puts everyone at ease. You will also become an excellent lip reader which will help immensely in your day to day life. Just let everyone know your situation including your students..It will gratify your heart to see how people respond. The people on this board are very helpful and compassionate . However, when it comes to technical advice about various implant maufacturers I would suggest you trust your doctors and audiologist opinion and advice because there is of course implant brand loyality anong the users themselves. Sometimes comments are made that are not always accurate. It's best to assess your own preferences and lifestyle with a professional. Most of the competitve brand advice is anecdotal. My best wishes to you ! I totally understand your fears but you will see how creative you can be.. Live for today! I shall keep my fingers crossed that your next screening for an implant is successful! Regina PS I just reread your post..your symptoms, tinnitus, hearing loss and dizziness are the symptoms of meniere's. Has your doctor assessed what is the underlying cause of your hearing loss. Fullness in the ears is also another symptom which usually happens right before the dizziness... ____________ _________ _________ __ From: chickmant <chickmant (DOT) com> groups (DOT) com Sent: Sun, February 14, 2010 9:20:36 PM Subject: new member HI , my name is Teri and I am 48 years old. I started losing my hearing when I was about 35, but didn't notice it much. That's when I first noticed my tinnitus. Now , 13 years later, I am deaf in my left hear and wear a hearing aid in my right ear. The last two years I have experienced profound hearing loss in my right ear and I keep noticing that I can no longer hear things I could hear six months ago.I am getting more and more frustrated all the time. I really have trouble on the phone now and I am picking up a CAP tel phone on Tuesday. I was evaluated in August for a CI but did not qualify. I am going back for another evaluation in March. I try to stay positive by appreciating all the technology that is available to people with hearing loss and my family and friends are very supportive. I'm going to my first HOH support group next week, so that should be helpful. I've been looking for people with a similar experience to mine... hearing loss in middle age. It's very scary. I " m also a kindergarten teacher, so my hearing loss presents challenges at work. Anyways, I have lots to say, but I would love to hear from anyone having a similar experience. Also one question I have is that I also started experiencing some dizziness the last few months. could this prevent me from getting a CI? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 By the way, I think the reply was meant for Teri but if not hope it was received to the right person. ________________________________ From: Regina Marulli <rmarulli@...> Sent: Sat, February 20, 2010 10:32:05 AM Subject: Re: new member  Hi Terri! I apologize for not responding sooner. I had some health issues with my Mom that has taken up much of my time. I 'm really glad I gave you a bit of relief coping with this situation. I'll try and answer your questions in bold below and also make comments on what you wrote. ____________ _________ _________ __ From: Teri Chickman <chickmant (DOT) com> groups (DOT) com Sent: Tue, February 16, 2010 12:47:12 AM Subject: Re: new member  Dear Regina, I cannot thank you enough for your reply. I am actually crying right now. I have been desperate to talk to people with this experience and reading your reply was such a comfort to me. As understanding as my family and friends have been, it's impossible for them to understand what this is like. I know what you mean..as understanding as people try to be it is impossible to understand all the day to day issues we deal with. Thats why this board is so useful I think. About four years ago, when I went to yet another audiologist for answers, he had me go through extensive testing and although he never said I officially had Meniere's Disease, he suggested that I go on the Meniere's Disease diet. Up until then, I had only had two mild vertigo episodes, but now I am experiencing dizziness quite often. Usually if I bend over, get out of bed,etc. So I started reading up on Meniere's and I believe I do have that. I f you are interested in finding out whether you have Meniere's disease, there is a web site www.veda.org (vesibular disorder association) that lists professionals by states that specialize in balance and vestibular disorders. There are sophisticated non invasive tests that can be done to diagnose if you have Meniere's or another vestibular disorder. If you live near Philly or Baltimore or Sarasota Fla I can give you names of specialists I have used. I just loved reading about your success with your implant. That is just fantastic! That gives me such hope. I was wondering what music sounds like with your implant. I was pleasantly surprised tho hear music that is not off key! I had spoken with another cochlear implant user who said she heard music but it is off key. I do have trouble with some lyrics but I always did even when I could hear well! The first music that sounded good was familiar songs. Now I am hearing commercial jingles on TV ..I do have trouble with loud music that' s sometimes played in movies ..It is very loud..but I just turn down the implant.That is one thing that gets me sad. Music sounds so distorted. I can listen to a familiar CD, where I know all of the lyrics and I can tell what song is playing. But if I try to listen to the radio, it's very frustrating. Six months ago, I could still listen to my favorite talk radio show on the way to work, but not anymore. Talk radio is how I practice hearing with my implant. I also drove 8 hours home yesterday and listened to a book on tape and understood what was going on.NPR is a great radio station because the announcers talk clearly as did the book on tape narrarator. I have trouble hearing accents still. Also, did you ever have an FM system? I got one about a year and a half ago, when I got a new hearing aid. It sounded like it was going to be so wonderful. But , for me it hasn't helped much. I have one and because my hearing with the meniere s fluctuated I did not have much success when I used it with the hearing aid. I have not tried it with the implant yet although the audiologist says it can be programmed to work .One on one in a restaurant was okay when my companion sat across from me with the FM around their neck. But forget putting it in the middle of the table with a group of people ..not good. The voices were jumbled to me I tried using it at restaurants and even at my own dinner table, but it doesn't help much. One other question I have has to do with going to musicals or plays. My friend invited me to go see the musical , Wicked. I thought if I got the CD and learned the lyrics ahead of time, by reading them , that would make it more enjoyable. Then I found out that the theater has I Caption, which sounds like a hand held device that shows captions of the dialogue. Do you know anything about this? I don't know too much about ICAP but I am going to research it. My daughter is at NYU and can get discount Broadway tickets thru the school. I love Broadway but it is very expensive and I missed so much at least before the implant it wasn t worth it. I'll let you know what I find out. Thank you so much for telling me about your daughter's teacher. That really made me feel better. My students know that I need to see their lips when they speak to me. I have made some pretty funny mistakes when it comes to interpreting what they say sometimes. I do have to laugh about it. ONe thing I haven't done is I haven't told the parents of my students about my hearing loss. My principal and my co-workers know. I was worried that the parents would be concerned that their child's teacher is hearing impaired. I know I need to get over this. But some things are hard. I have the email address of my daughter's teacher. My husband is an orthodontist and she recently was a patient of his . Would you like me to e mail her to ask her if she would be willing to share teaching tips with you? As far as the parents go I would bet many know already thru their children. Maybe you should talk with your principal and discuss a strategy on telling the parents. I remember Alyssa's (my daughter) teacher was matter a fact about her hearing loss on back to school night and announced it to all the parents. (this was way before her implant) My reaction was wow, what a brave woman! I am so glad I joined this group. I will take one day at a time. I am so glad you did too..you are not alone in this situation Regina PS it you want to converse privately my email address is rmarulli (DOT) com Thank you so much. Teri ____________ _________ _________ __ From: Regina Marulli <rmarulli (DOT) com> groups (DOT) com Sent: Mon, February 15, 2010 6:45:01 AM Subject: Re: new member Your post touched me...I had the same experience. My hearing issues started at 32. I am 53 now. I lived with diminished hearing in my right ear due to Meniere's disease and didn t think much about it until there was no usable hearing, which happened 10 years ago. At about the same time the Menieres started in my left ear! I still wear a powerful hearing aid in that ear but eventually my hearing will be gone in that ear too. I went to a very respected specialist in New York City when the hearing loss started in my left ear 10 years ago. Our goal was to preserve my hearing as long as possible which proved unsuccessful. At my very first appointment with him he promised me I would never be deaf because I could have an implant. He was right. I was approved for an implant last September for my right ear, and had the surgery in November and at the activation I could hear ! Now my comprehension is about 90% with just the implant and not the hearing aid on in my left ear.. So 90% on just the implanted ear! Of course there is variations in my hearing level in the envioroment I am in but I still hear very well even in noisy situations by changing the implant settings. I am still in the adjustment stage and my hearing should continue to improve for a while yet. I will go back next month for a hearing test and another mapping How did I handle the years before the implant? I tried to stay positive, trusted my doctor's promise, and lived one day at a time. I was also proactive. I did as much research as I could about my disease . I also thought it very useful to have some professional therapy as I am a firm believer in the mind body connection, as was my original doctor. I can honestly say I tried everything and have been guiding several people I know with Meniere's through the same process. Many of these people have had much success with some of the treatments that were unsuccessful for me which has been very gratifying. I also tried to remind myself of the positives in having this situation at this time. As you said there is so much available now like closed captioning, email, text messaging CAP tel that we are truly fortunate. It sounds like you are taking advantage of those resources already! Great! Being a teacher I understand your fear. My daughter had a middle school teacher who had severe hearing loss when my daughter had her as a teacher. My daughter said it was sometimes difficult for her but she handled her mistakes with humor and dignity. She had a cochlear implant a few years ago and she has successfully continued teaching a very tough school age. So be assured that there will be uncomfortable moments but it is possible to keep teaching and teaching quite successfully. My daughter's teacher found ,which I also find, that if she kept her sense of humor and was matter of fact about the situation or her error in hearing something it puts everyone at ease. You will also become an excellent lip reader which will help immensely in your day to day life. Just let everyone know your situation including your students..It will gratify your heart to see how people respond. The people on this board are very helpful and compassionate . However, when it comes to technical advice about various implant maufacturers I would suggest you trust your doctors and audiologist opinion and advice because there is of course implant brand loyality anong the users themselves. Sometimes comments are made that are not always accurate. It's best to assess your own preferences and lifestyle with a professional. Most of the competitve brand advice is anecdotal. My best wishes to you ! I totally understand your fears but you will see how creative you can be.. Live for today! I shall keep my fingers crossed that your next screening for an implant is successful! Regina PS I just reread your post..your symptoms, tinnitus, hearing loss and dizziness are the symptoms of meniere's. Has your doctor assessed what is the underlying cause of your hearing loss. Fullness in the ears is also another symptom which usually happens right before the dizziness... ____________ _________ _________ __ From: chickmant <chickmant (DOT) com> groups (DOT) com Sent: Sun, February 14, 2010 9:20:36 PM Subject: new member HI , my name is Teri and I am 48 years old. I started losing my hearing when I was about 35, but didn't notice it much. That's when I first noticed my tinnitus. Now , 13 years later, I am deaf in my left hear and wear a hearing aid in my right ear. The last two years I have experienced profound hearing loss in my right ear and I keep noticing that I can no longer hear things I could hear six months ago.I am getting more and more frustrated all the time. I really have trouble on the phone now and I am picking up a CAP tel phone on Tuesday. I was evaluated in August for a CI but did not qualify. I am going back for another evaluation in March. I try to stay positive by appreciating all the technology that is available to people with hearing loss and my family and friends are very supportive. I'm going to my first HOH support group next week, so that should be helpful. I've been looking for people with a similar experience to mine... hearing loss in middle age. It's very scary. I " m also a kindergarten teacher, so my hearing loss presents challenges at work. Anyways, I have lots to say, but I would love to hear from anyone having a similar experience. Also one question I have is that I also started experiencing some dizziness the last few months. could this prevent me from getting a CI? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Hi I think my post was confusing because I thought i had bolded my responses to Terri 's questions. Unfortunately the bold of my answers to her questions were not picked up by . I was answering some questions she had about the implant and her possible menieres diagnosis I do have meniere's and have for 20 years..I recently had an implant in 1 ear. I do have bi lateral menieres but the onset of the menieres in the 2nd ear was 10 years behind my implanted ear so I am not at the same hearing level loss in both ears. Eventually my hearing will be as bad as my implant ear was before my implant. I have had diminished menieres symptoms in my implant ear since the surgery I have no tinnitus and no dizziness at all! I have heard menieres cochlear implant patients are all different in their response to the implant just as the disease symptoms is different in various people. I do not have auto immune menieres as proved by the oral steroids I have taken as well as steroid injections I had into my inner ear. I had no help from the steroids.Other people I know with menieres  have been helped by the steroid injections. If you have not done so you might look into steroid treatment since yours seems to be auto immune. My experiences with menieres were similar to yours when it first began 20 years ago..however i believe i did have burn out with my menieres so my symptoms were not so severe after a few years. Thank you for your response..I feel blessed I have found my answer to resolving my menieres through my implant Regina ________________________________ From: Ortis <qglphx1@...> Sent: Sat, February 20, 2010 10:50:19 PM Subject: Re: new member  Dear Regina, I know how you feel with what your going thru as far as Mineares Disease. I woke up on April the 28th of 2009 totally deaf in both ears or darn close. They said I have Sudden Profound Sensenoreal Hearing Loss, a month after that I was diagnosed with Minears, a month after that I was diagnosed with AIED (AutoImmune Inner Ear Disease) and to add to everything, I found out I had an Arachnoid Cyst in the lower part of my brain. I had my first Mineares attack and it wasn't severe but in July of last year I was up North staying since I didn't need to be in the valley anymore for business. I was in Flagstaff and all of a sudden I couldn't walk, was throwing up, felt like I had 1000lbs on me, the house is 22 miles from Flag. and I was driven home and helped up the stairs. I went to bed thinking I will be asleep for a couple of hours and the next thing I knew it was 12 hours later. I had the second major one the second day. I woke up at 02:30 and knew I couldn't get ahold of my Dr. so I started browsing the web and came across a Dr. Hain in Chicago from NorthWestern University. I took a chance and emailed him, I received an email back from him about three hours later and was told with everything that happened to me so suddenly that it's very rare. I was sitting on the deck of my mothers place after reading that email. Joyce came outside and wrote on a notepad to ask what was wrong, I just started crying. I am not the type of guy for being 40 to admit to crying but have learned since all of this has happened I really don't care what people think anymore. I have so many journals from my journey since this happened that I want to write a book. There is a little lady in myhearingloss. org on Monday that is a moderator and she was implanted in both ears. I wrote her after getting that email and told her about things. She said that after she had her implants she had Mineares even worse for the first three years and had to go thru physical therapy. I hope I don't have to do that and pray I don't but I at least know what to expect as a worse case scenario. Just keep asking people in here as for that's what I have been doing. Gain all the knoweledge and assistance since thats why they have these groups. My business is shut down, my income was cut by 3/4's but i'm still alive and have my mother, brother, sister, a good close friend and the people here as well as in HLAA. If you ever get the attacks and just want someone to talk to then I am here. I had two more about two weeks ago and was in bed for two days. I guess you can say I just got use to it. The ringing non stop in the ears doesn't help much either and drives me nuts but again, getting use to things. Try to stay away from stress. Alot of movement as well from what I have found out. You'll get thru it, P.S. I don't write the best letters unless I am doing a sales call in dedicated logistics but of course don't do that anymore either. Pardon if it's not done perfect. ____________ _________ _________ __ From: Regina Marulli <rmarulli (DOT) com> groups (DOT) com Sent: Sat, February 20, 2010 10:32:05 AM Subject: Re: new member  Hi Terri! I apologize for not responding sooner. I had some health issues with my Mom that has taken up much of my time. I 'm really glad I gave you a bit of relief coping with this situation. I'll try and answer your questions in bold below and also make comments on what you wrote. ____________ _________ _________ __ From: Teri Chickman <chickmant (DOT) com> groups (DOT) com Sent: Tue, February 16, 2010 12:47:12 AM Subject: Re: new member  Dear Regina, I cannot thank you enough for your reply. I am actually crying right now. I have been desperate to talk to people with this experience and reading your reply was such a comfort to me. As understanding as my family and friends have been, it's impossible for them to understand what this is like. I know what you mean..as understanding as people try to be it is impossible to understand all the day to day issues we deal with. Thats why this board is so useful I think. About four years ago, when I went to yet another audiologist for answers, he had me go through extensive testing and although he never said I officially had Meniere's Disease, he suggested that I go on the Meniere's Disease diet. Up until then, I had only had two mild vertigo episodes, but now I am experiencing dizziness quite often. Usually if I bend over, get out of bed,etc. So I started reading up on Meniere's and I believe I do have that. I f you are interested in finding out whether you have Meniere's disease, there is a web site www.veda.org (vesibular disorder association) that lists professionals by states that specialize in balance and vestibular disorders. There are sophisticated non invasive tests that can be done to diagnose if you have Meniere's or another vestibular disorder. If you live near Philly or Baltimore or Sarasota Fla I can give you names of specialists I have used. I just loved reading about your success with your implant. That is just fantastic! That gives me such hope. I was wondering what music sounds like with your implant. I was pleasantly surprised tho hear music that is not off key! I had spoken with another cochlear implant user who said she heard music but it is off key. I do have trouble with some lyrics but I always did even when I could hear well! The first music that sounded good was familiar songs. Now I am hearing commercial jingles on TV ..I do have trouble with loud music that' s sometimes played in movies ..It is very loud..but I just turn down the implant.That is one thing that gets me sad. Music sounds so distorted. I can listen to a familiar CD, where I know all of the lyrics and I can tell what song is playing. But if I try to listen to the radio, it's very frustrating. Six months ago, I could still listen to my favorite talk radio show on the way to work, but not anymore. Talk radio is how I practice hearing with my implant. I also drove 8 hours home yesterday and listened to a book on tape and understood what was going on.NPR is a great radio station because the announcers talk clearly as did the book on tape narrarator. I have trouble hearing accents still. Also, did you ever have an FM system? I got one about a year and a half ago, when I got a new hearing aid. It sounded like it was going to be so wonderful. But , for me it hasn't helped much. I have one and because my hearing with the meniere s fluctuated I did not have much success when I used it with the hearing aid. I have not tried it with the implant yet although the audiologist says it can be programmed to work .One on one in a restaurant was okay when my companion sat across from me with the FM around their neck. But forget putting it in the middle of the table with a group of people ..not good. The voices were jumbled to me I tried using it at restaurants and even at my own dinner table, but it doesn't help much. One other question I have has to do with going to musicals or plays. My friend invited me to go see the musical , Wicked. I thought if I got the CD and learned the lyrics ahead of time, by reading them , that would make it more enjoyable. Then I found out that the theater has I Caption, which sounds like a hand held device that shows captions of the dialogue. Do you know anything about this? I don't know too much about ICAP but I am going to research it. My daughter is at NYU and can get discount Broadway tickets thru the school. I love Broadway but it is very expensive and I missed so much at least before the implant it wasn t worth it. I'll let you know what I find out. Thank you so much for telling me about your daughter's teacher. That really made me feel better. My students know that I need to see their lips when they speak to me. I have made some pretty funny mistakes when it comes to interpreting what they say sometimes. I do have to laugh about it. ONe thing I haven't done is I haven't told the parents of my students about my hearing loss. My principal and my co-workers know. I was worried that the parents would be concerned that their child's teacher is hearing impaired. I know I need to get over this. But some things are hard. I have the email address of my daughter's teacher. My husband is an orthodontist and she recently was a patient of his . Would you like me to e mail her to ask her if she would be willing to share teaching tips with you? As far as the parents go I would bet many know already thru their children. Maybe you should talk with your principal and discuss a strategy on telling the parents. I remember Alyssa's (my daughter) teacher was matter a fact about her hearing loss on back to school night and announced it to all the parents. (this was way before her implant) My reaction was wow, what a brave woman! I am so glad I joined this group. I will take one day at a time. I am so glad you did too..you are not alone in this situation Regina PS it you want to converse privately my email address is rmarulli (DOT) com Thank you so much. Teri ____________ _________ _________ __ From: Regina Marulli <rmarulli (DOT) com> groups (DOT) com Sent: Mon, February 15, 2010 6:45:01 AM Subject: Re: new member Your post touched me...I had the same experience. My hearing issues started at 32. I am 53 now. I lived with diminished hearing in my right ear due to Meniere's disease and didn t think much about it until there was no usable hearing, which happened 10 years ago. At about the same time the Menieres started in my left ear! I still wear a powerful hearing aid in that ear but eventually my hearing will be gone in that ear too. I went to a very respected specialist in New York City when the hearing loss started in my left ear 10 years ago. Our goal was to preserve my hearing as long as possible which proved unsuccessful. At my very first appointment with him he promised me I would never be deaf because I could have an implant. He was right. I was approved for an implant last September for my right ear, and had the surgery in November and at the activation I could hear ! Now my comprehension is about 90% with just the implant and not the hearing aid on in my left ear.. So 90% on just the implanted ear! Of course there is variations in my hearing level in the envioroment I am in but I still hear very well even in noisy situations by changing the implant settings. I am still in the adjustment stage and my hearing should continue to improve for a while yet. I will go back next month for a hearing test and another mapping How did I handle the years before the implant? I tried to stay positive, trusted my doctor's promise, and lived one day at a time. I was also proactive. I did as much research as I could about my disease . I also thought it very useful to have some professional therapy as I am a firm believer in the mind body connection, as was my original doctor. I can honestly say I tried everything and have been guiding several people I know with Meniere's through the same process. Many of these people have had much success with some of the treatments that were unsuccessful for me which has been very gratifying. I also tried to remind myself of the positives in having this situation at this time. As you said there is so much available now like closed captioning, email, text messaging CAP tel that we are truly fortunate. It sounds like you are taking advantage of those resources already! Great! Being a teacher I understand your fear. My daughter had a middle school teacher who had severe hearing loss when my daughter had her as a teacher. My daughter said it was sometimes difficult for her but she handled her mistakes with humor and dignity. She had a cochlear implant a few years ago and she has successfully continued teaching a very tough school age. So be assured that there will be uncomfortable moments but it is possible to keep teaching and teaching quite successfully. My daughter's teacher found ,which I also find, that if she kept her sense of humor and was matter of fact about the situation or her error in hearing something it puts everyone at ease. You will also become an excellent lip reader which will help immensely in your day to day life. Just let everyone know your situation including your students..It will gratify your heart to see how people respond. The people on this board are very helpful and compassionate . However, when it comes to technical advice about various implant maufacturers I would suggest you trust your doctors and audiologist opinion and advice because there is of course implant brand loyality anong the users themselves. Sometimes comments are made that are not always accurate. It's best to assess your own preferences and lifestyle with a professional. Most of the competitve brand advice is anecdotal. My best wishes to you ! I totally understand your fears but you will see how creative you can be.. Live for today! I shall keep my fingers crossed that your next screening for an implant is successful! Regina PS I just reread your post..your symptoms, tinnitus, hearing loss and dizziness are the symptoms of meniere's. Has your doctor assessed what is the underlying cause of your hearing loss. Fullness in the ears is also another symptom which usually happens right before the dizziness... ____________ _________ _________ __ From: chickmant <chickmant (DOT) com> groups (DOT) com Sent: Sun, February 14, 2010 9:20:36 PM Subject: new member HI , my name is Teri and I am 48 years old. I started losing my hearing when I was about 35, but didn't notice it much. That's when I first noticed my tinnitus. Now , 13 years later, I am deaf in my left hear and wear a hearing aid in my right ear. The last two years I have experienced profound hearing loss in my right ear and I keep noticing that I can no longer hear things I could hear six months ago.I am getting more and more frustrated all the time. I really have trouble on the phone now and I am picking up a CAP tel phone on Tuesday. I was evaluated in August for a CI but did not qualify. I am going back for another evaluation in March. I try to stay positive by appreciating all the technology that is available to people with hearing loss and my family and friends are very supportive. I'm going to my first HOH support group next week, so that should be helpful. I've been looking for people with a similar experience to mine... hearing loss in middle age. It's very scary. I " m also a kindergarten teacher, so my hearing loss presents challenges at work. Anyways, I have lots to say, but I would love to hear from anyone having a similar experience. Also one question I have is that I also started experiencing some dizziness the last few months. could this prevent me from getting a CI? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2010 Report Share Posted February 20, 2010 Regina, I am hoping the same thing when I get my implant this Thursday. The attacks are not fun at all and don't with them upon anyone.  I guess this is part of life that we have to deal with anyway. I always thought I would have a heart attack by 40 but god didn't want that yet. Guess i'm on the waiting list.............. Sorry but thought I would throw in a little humor. I get thru them but just basically sleep thru them when I know they are approaching, we who have it get use to it. ________________________________ From: Regina Marulli <rmarulli@...> Sent: Sat, February 20, 2010 9:16:24 PM Subject: Re: new member  Hi I think my post was confusing because I thought i had bolded my responses to Terri 's questions. Unfortunately the bold of my answers to her questions were not picked up by . I was answering some questions she had about the implant and her possible menieres diagnosis I do have meniere's and have for 20 years..I recently had an implant in 1 ear. I do have bi lateral menieres but the onset of the menieres in the 2nd ear was 10 years behind my implanted ear so I am not at the same hearing level loss in both ears. Eventually my hearing will be as bad as my implant ear was before my implant. I have had diminished menieres symptoms in my implant ear since the surgery I have no tinnitus and no dizziness at all! I have heard menieres cochlear implant patients are all different in their response to the implant just as the disease symptoms is different in various people. I do not have auto immune menieres as proved by the oral steroids I have taken as well as steroid injections I had into my inner ear. I had no help from the steroids.Other people I know with menieres  have been helped by the steroid injections. If you have not done so you might look into steroid treatment since yours seems to be auto immune. My experiences with menieres were similar to yours when it first began 20 years ago..however i believe i did have burn out with my menieres so my symptoms were not so severe after a few years. Thank you for your response..I feel blessed I have found my answer to resolving my menieres through my implant Regina ____________ _________ _________ __ From: Ortis <qglphx1 (DOT) com> groups (DOT) com Sent: Sat, February 20, 2010 10:50:19 PM Subject: Re: new member  Dear Regina, I know how you feel with what your going thru as far as Mineares Disease. I woke up on April the 28th of 2009 totally deaf in both ears or darn close. They said I have Sudden Profound Sensenoreal Hearing Loss, a month after that I was diagnosed with Minears, a month after that I was diagnosed with AIED (AutoImmune Inner Ear Disease) and to add to everything, I found out I had an Arachnoid Cyst in the lower part of my brain. I had my first Mineares attack and it wasn't severe but in July of last year I was up North staying since I didn't need to be in the valley anymore for business. I was in Flagstaff and all of a sudden I couldn't walk, was throwing up, felt like I had 1000lbs on me, the house is 22 miles from Flag. and I was driven home and helped up the stairs. I went to bed thinking I will be asleep for a couple of hours and the next thing I knew it was 12 hours later. I had the second major one the second day. I woke up at 02:30 and knew I couldn't get ahold of my Dr. so I started browsing the web and came across a Dr. Hain in Chicago from NorthWestern University. I took a chance and emailed him, I received an email back from him about three hours later and was told with everything that happened to me so suddenly that it's very rare. I was sitting on the deck of my mothers place after reading that email. Joyce came outside and wrote on a notepad to ask what was wrong, I just started crying. I am not the type of guy for being 40 to admit to crying but have learned since all of this has happened I really don't care what people think anymore. I have so many journals from my journey since this happened that I want to write a book. There is a little lady in myhearingloss. org on Monday that is a moderator and she was implanted in both ears. I wrote her after getting that email and told her about things. She said that after she had her implants she had Mineares even worse for the first three years and had to go thru physical therapy. I hope I don't have to do that and pray I don't but I at least know what to expect as a worse case scenario. Just keep asking people in here as for that's what I have been doing. Gain all the knoweledge and assistance since thats why they have these groups. My business is shut down, my income was cut by 3/4's but i'm still alive and have my mother, brother, sister, a good close friend and the people here as well as in HLAA. If you ever get the attacks and just want someone to talk to then I am here. I had two more about two weeks ago and was in bed for two days. I guess you can say I just got use to it. The ringing non stop in the ears doesn't help much either and drives me nuts but again, getting use to things. Try to stay away from stress. Alot of movement as well from what I have found out. You'll get thru it, P.S. I don't write the best letters unless I am doing a sales call in dedicated logistics but of course don't do that anymore either. Pardon if it's not done perfect. ____________ _________ _________ __ From: Regina Marulli <rmarulli (DOT) com> groups (DOT) com Sent: Sat, February 20, 2010 10:32:05 AM Subject: Re: new member  Hi Terri! I apologize for not responding sooner. I had some health issues with my Mom that has taken up much of my time. I 'm really glad I gave you a bit of relief coping with this situation. I'll try and answer your questions in bold below and also make comments on what you wrote. ____________ _________ _________ __ From: Teri Chickman <chickmant (DOT) com> groups (DOT) com Sent: Tue, February 16, 2010 12:47:12 AM Subject: Re: new member  Dear Regina, I cannot thank you enough for your reply. I am actually crying right now. I have been desperate to talk to people with this experience and reading your reply was such a comfort to me. As understanding as my family and friends have been, it's impossible for them to understand what this is like. I know what you mean..as understanding as people try to be it is impossible to understand all the day to day issues we deal with. Thats why this board is so useful I think. About four years ago, when I went to yet another audiologist for answers, he had me go through extensive testing and although he never said I officially had Meniere's Disease, he suggested that I go on the Meniere's Disease diet. Up until then, I had only had two mild vertigo episodes, but now I am experiencing dizziness quite often. Usually if I bend over, get out of bed,etc. So I started reading up on Meniere's and I believe I do have that. I f you are interested in finding out whether you have Meniere's disease, there is a web site www.veda.org (vesibular disorder association) that lists professionals by states that specialize in balance and vestibular disorders. There are sophisticated non invasive tests that can be done to diagnose if you have Meniere's or another vestibular disorder. If you live near Philly or Baltimore or Sarasota Fla I can give you names of specialists I have used. I just loved reading about your success with your implant. That is just fantastic! That gives me such hope. I was wondering what music sounds like with your implant. I was pleasantly surprised tho hear music that is not off key! I had spoken with another cochlear implant user who said she heard music but it is off key. I do have trouble with some lyrics but I always did even when I could hear well! The first music that sounded good was familiar songs. Now I am hearing commercial jingles on TV ..I do have trouble with loud music that' s sometimes played in movies ..It is very loud..but I just turn down the implant.That is one thing that gets me sad. Music sounds so distorted. I can listen to a familiar CD, where I know all of the lyrics and I can tell what song is playing. But if I try to listen to the radio, it's very frustrating. Six months ago, I could still listen to my favorite talk radio show on the way to work, but not anymore. Talk radio is how I practice hearing with my implant. I also drove 8 hours home yesterday and listened to a book on tape and understood what was going on.NPR is a great radio station because the announcers talk clearly as did the book on tape narrarator. I have trouble hearing accents still. Also, did you ever have an FM system? I got one about a year and a half ago, when I got a new hearing aid. It sounded like it was going to be so wonderful. But , for me it hasn't helped much. I have one and because my hearing with the meniere s fluctuated I did not have much success when I used it with the hearing aid. I have not tried it with the implant yet although the audiologist says it can be programmed to work .One on one in a restaurant was okay when my companion sat across from me with the FM around their neck. But forget putting it in the middle of the table with a group of people ..not good. The voices were jumbled to me I tried using it at restaurants and even at my own dinner table, but it doesn't help much. One other question I have has to do with going to musicals or plays. My friend invited me to go see the musical , Wicked. I thought if I got the CD and learned the lyrics ahead of time, by reading them , that would make it more enjoyable. Then I found out that the theater has I Caption, which sounds like a hand held device that shows captions of the dialogue. Do you know anything about this? I don't know too much about ICAP but I am going to research it. My daughter is at NYU and can get discount Broadway tickets thru the school. I love Broadway but it is very expensive and I missed so much at least before the implant it wasn t worth it. I'll let you know what I find out. Thank you so much for telling me about your daughter's teacher. That really made me feel better. My students know that I need to see their lips when they speak to me. I have made some pretty funny mistakes when it comes to interpreting what they say sometimes. I do have to laugh about it. ONe thing I haven't done is I haven't told the parents of my students about my hearing loss. My principal and my co-workers know. I was worried that the parents would be concerned that their child's teacher is hearing impaired. I know I need to get over this. But some things are hard. I have the email address of my daughter's teacher. My husband is an orthodontist and she recently was a patient of his . Would you like me to e mail her to ask her if she would be willing to share teaching tips with you? As far as the parents go I would bet many know already thru their children. Maybe you should talk with your principal and discuss a strategy on telling the parents. I remember Alyssa's (my daughter) teacher was matter a fact about her hearing loss on back to school night and announced it to all the parents. (this was way before her implant) My reaction was wow, what a brave woman! I am so glad I joined this group. I will take one day at a time. I am so glad you did too..you are not alone in this situation Regina PS it you want to converse privately my email address is rmarulli (DOT) com Thank you so much. Teri ____________ _________ _________ __ From: Regina Marulli <rmarulli (DOT) com> groups (DOT) com Sent: Mon, February 15, 2010 6:45:01 AM Subject: Re: new member Your post touched me...I had the same experience. My hearing issues started at 32. I am 53 now. I lived with diminished hearing in my right ear due to Meniere's disease and didn t think much about it until there was no usable hearing, which happened 10 years ago. At about the same time the Menieres started in my left ear! I still wear a powerful hearing aid in that ear but eventually my hearing will be gone in that ear too. I went to a very respected specialist in New York City when the hearing loss started in my left ear 10 years ago. Our goal was to preserve my hearing as long as possible which proved unsuccessful. At my very first appointment with him he promised me I would never be deaf because I could have an implant. He was right. I was approved for an implant last September for my right ear, and had the surgery in November and at the activation I could hear ! Now my comprehension is about 90% with just the implant and not the hearing aid on in my left ear.. So 90% on just the implanted ear! Of course there is variations in my hearing level in the envioroment I am in but I still hear very well even in noisy situations by changing the implant settings. I am still in the adjustment stage and my hearing should continue to improve for a while yet. I will go back next month for a hearing test and another mapping How did I handle the years before the implant? I tried to stay positive, trusted my doctor's promise, and lived one day at a time. I was also proactive. I did as much research as I could about my disease . I also thought it very useful to have some professional therapy as I am a firm believer in the mind body connection, as was my original doctor. I can honestly say I tried everything and have been guiding several people I know with Meniere's through the same process. Many of these people have had much success with some of the treatments that were unsuccessful for me which has been very gratifying. I also tried to remind myself of the positives in having this situation at this time. As you said there is so much available now like closed captioning, email, text messaging CAP tel that we are truly fortunate. It sounds like you are taking advantage of those resources already! Great! Being a teacher I understand your fear. My daughter had a middle school teacher who had severe hearing loss when my daughter had her as a teacher. My daughter said it was sometimes difficult for her but she handled her mistakes with humor and dignity. She had a cochlear implant a few years ago and she has successfully continued teaching a very tough school age. So be assured that there will be uncomfortable moments but it is possible to keep teaching and teaching quite successfully. My daughter's teacher found ,which I also find, that if she kept her sense of humor and was matter of fact about the situation or her error in hearing something it puts everyone at ease. You will also become an excellent lip reader which will help immensely in your day to day life. Just let everyone know your situation including your students..It will gratify your heart to see how people respond. The people on this board are very helpful and compassionate . However, when it comes to technical advice about various implant maufacturers I would suggest you trust your doctors and audiologist opinion and advice because there is of course implant brand loyality anong the users themselves. Sometimes comments are made that are not always accurate. It's best to assess your own preferences and lifestyle with a professional. Most of the competitve brand advice is anecdotal. My best wishes to you ! I totally understand your fears but you will see how creative you can be.. Live for today! I shall keep my fingers crossed that your next screening for an implant is successful! Regina PS I just reread your post..your symptoms, tinnitus, hearing loss and dizziness are the symptoms of meniere's. Has your doctor assessed what is the underlying cause of your hearing loss. Fullness in the ears is also another symptom which usually happens right before the dizziness... ____________ _________ _________ __ From: chickmant <chickmant (DOT) com> groups (DOT) com Sent: Sun, February 14, 2010 9:20:36 PM Subject: new member HI , my name is Teri and I am 48 years old. I started losing my hearing when I was about 35, but didn't notice it much. That's when I first noticed my tinnitus. Now , 13 years later, I am deaf in my left hear and wear a hearing aid in my right ear. The last two years I have experienced profound hearing loss in my right ear and I keep noticing that I can no longer hear things I could hear six months ago.I am getting more and more frustrated all the time. I really have trouble on the phone now and I am picking up a CAP tel phone on Tuesday. I was evaluated in August for a CI but did not qualify. I am going back for another evaluation in March. I try to stay positive by appreciating all the technology that is available to people with hearing loss and my family and friends are very supportive. I'm going to my first HOH support group next week, so that should be helpful. I've been looking for people with a similar experience to mine... hearing loss in middle age. It's very scary. I " m also a kindergarten teacher, so my hearing loss presents challenges at work. Anyways, I have lots to say, but I would love to hear from anyone having a similar experience. Also one question I have is that I also started experiencing some dizziness the last few months. could this prevent me from getting a CI? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2010 Report Share Posted February 21, 2010 Hi, Ortis - wishing you the best of luck on Thursday! Remember that many of us were dizzy after surgery for a week or so. So give it TIME and give yourself time to recuperate! Jackie ) Quote Link to comment Share on other sites More sharing options...
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