Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 I'm glad to see I'm not the only one getting really tired when I take the lex. Like the first day I took a whole 10mg pill (I had to take 1/2 pills for the first couple of days to make sure I didn't have a bad reaction to it.) I slept for the whole day! I'm about to start trying cutting my pills in half and taking half in the morning and half at night. I just feel like taking it at night makes me lose half of the benifits of the drug since I'm asleep when they start working and it starts wearing off towards the end of the day. i just recently switched to Lex after being on Welbutrin for four months. I think I built up an immunity to that and that's why my dr switched me. But like you, I also went through a very stressful point, so my depression got a lot worse anyway and the Welbutrin just wasn't cuttin' it anymore. Anyway, welcome to the group, you'll find a lot of support here...I know I have > Hi there, > > Im new here. i have been on lexapro for about 6 months now. have any > ov you that have been on 10mg seem like you get immune to it? i have > not been on alot of antidepressants but depression is really high in > my family, so my doc suggested this. it has done wonders. the reason > she gave me lex was because i have been gaining lots of weight over > the last year and this is supposed to have the least amount of weight > gain as a side effect. i have to take it at night, it still makes me > wwwwaaaaaaayyyy too tired to function during the day.... and > considering all i do all day is work with numbers at the computer, i > could almost fall asleep while working, it was aweful. it was > working just fine until lately... but also my stress level has went > up. My daughter has ocd and maybe bipolar, and my son (though i love > him) is some times a little monster for me! Im divored and just > bought my 2nd house (sold the first one) so im under alot of stress. > I do have a lower sex drive, but that is a good thing since im not > dating any way. i do also get an upset stomach if i dont take it > with food. i have a doc appt next week and im wondering if i should > ask her to increase it. so that is my into... sorry its so long, > but i just love the fact that i will be able to communicate with some > others on lex. its such a new drug and im new to taking anti > depressants (though not new to deprerssion... my mom was manic > depressive and my sister is really messed up and wont take her meds > right all the time, she is on effexor, and skips pills all the time > when she cant afford to get them....) any way any advice and info > will be appreaciated. Hope you all have a great day!!! > > Bye, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2003 Report Share Posted October 9, 2003 Hey evie, I am actually going in on the 24th because my ctoma came back after 4 and half years free of this monster. Any questions you have please don't hesitate to ask. Everyone here is very able and willing to help and offer support and advice. You can add me to messenger if you have it. emilia1023@... Take care, Evie <naste_eves@...> wrote: Hi everyone well about 18 months ago I went into hospital for a 2 hour operation to have my cholesteatoma removed in my left ear, but in the process they had to remove 2 of my hearing bones and 3/4 of my ear drum. I am a student who finds it very difficult to hear in my classroom because I only have 20% hearing in my left ear. Just recently I have been told that it's grown back and I hae to visit a new specialist. I joined this group because I wanted to see if there were others out there just like me who go through the same thing so I can have support. thanks evie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2003 Report Share Posted October 9, 2003 Evie - Yes, I have yet to experience the reprecussions of the surgery since I had it only 2 weeks ago. They had to do quite a bit of reconstruction surgery on my ear bones as well. All I know is that if I have trouble seeing I wear my glasses and if I have trouble hearing... I'll have to get a hearing aid. Too bad they don't call them seeing aids as well. Then the stigma of having it is fully excepted by today's society. Don't feel bad if you have to get one or already have one. - On Thu, 09 Oct 2003 03:29:05 -0000, Evie wrote > Hi everyone well about 18 months ago I went into hospital for a 2 > hour operation to have my cholesteatoma removed in my left ear, but > in the process they had to remove 2 of my hearing bones and 3/4 of > my ear drum. I am a student who finds it very difficult to hear in > my classroom because I only have 20% hearing in my left ear. Just > recently I have been told that it's grown back and I hae to visit a > new specialist. I joined this group because I wanted to see if > there were others out there just like me who go through the same > thing so I can have support. thanks evie > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2003 Report Share Posted November 7, 2003 Welcome to the group Jill.It is amazing how SSRI's can work so differently with us .That is why this group is so important.We can get information about drugs , but the BEST way to understand and get information on a medication is by talking to other people on the drug, and comparing notes . Glad to have you aboard. Hugs Plagal aka Lesli > I've been on tons of anti depressants. I was on Celexa for a while, from > 2000-2001, then got pregnant and got off of it. After I finished nursing my > child I went back on it, but this time it didn't seem to work so my family > practice doctor told me about Lexapro. She started me on 20 mg. At first I > thought it did a better job than Celexa, but lately I've been having more > episodes. As far as side effects I don't think I have any, although I am > always sick. I'm always tired, sleep all the time, every chance I get and I > have bad headaches (Prozac gave me bad headaches too, so it could be the > Lexapro). No sexual dysfunction or dry mouth - which is what a lot of the > other meds did for me. > > > > Background: > > I'm 32 years old, married for 6 years and have a 19 month old daughter. I > live in NM, although I have lived all over the place - CA, TX, WA, VA, MA, > CO. I was originally diagnosed with PTSD and Dysthymia back in 1994. > > > > Jill > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 Hi Sheila, Welcome to the group. I'm sorry you are dealing with hearing loss. It is difficult to try to communicate by speaking and lipreading. Knowing ASL must be beneficial to you when you need it. I lost my hearing too late in life to be able to learn although I tried. I was a bit stumped when I read about your hearing aid but I did look up DigiFocus II and see it is made by Oticon. I have always heard that their products were very good, although I never used them. When I experienced the rapid drop in hearing, I also experienced a rapid increase in tinnitus and dizziness. My hearing history is not the same as yours but there are others on the list who also are deaf due to German Measles. I am sure that you will see responses. It will be interesting to hear if they have shared your hearing loss experiences. Good luck at your appointment on Thursday. House Ear has the reputation of being one of the best centers. My surgeon here in Albuquerque trained at House Ear. I hope they can answer your questions. Please let us know how things go. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2003 Report Share Posted December 21, 2003 Hi Charlene, i've been swimming and doing all the stuff that they say not to do after the operations. all i use is the wax and i mole it to my ear and it seals my ear. well i hope to hear from you again. ~ leanon <charlene_playdoh@...> wrote: Hi, I'm new here also. I'm 19 and had cholesteatoma. I recently had a check up after getting discharge. But since the operation 4 years ago I have been ok, except that I havent been swimming since I was 11 years old because of this disease. Anyway, I have read through some of your stories and am glad to hear that there are others in the same condition as me. Thank you!CHARLENE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 Hi le, I wanted to know what kind of wax do you use? I am one of those who would never dare to try swimimg, sence all my experiences with this bad ear! I had C-toma surgery in the early 80's, and many reconstructive surgeries, still going through all this, as I recently had the middle ear and the estachion tube sealed, due to drainage. I wasnt diagnosed with the C-toma till the 80's although mine was congential. I use cotton balls and vasaliene to keep water out of my ears. I was wondering about the wax you mentioned. I have seen wax molds that can be shaped to fit your ear, in the store. Is this what your using? Sounds interesting, and easier to use! Happy New Year! > Hi, > > I'm new here also. I'm 19 and had cholesteatoma. I recently had a > check up after getting discharge. But since the operation 4 years > ago I have been ok, except that I havent been swimming since I was > 11 years old because of this disease. Anyway, I have read through > some of your stories and am glad to hear that there are others in > the same condition as me. > > Thank you! > CHARLENE > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2003 Report Share Posted December 28, 2003 Thank you le, I will check it out when I go to the store again. > > Hi, > > > > I'm new here also. I'm 19 and had cholesteatoma. I recently had a > > check up after getting discharge. But since the operation 4 years > > ago I have been ok, except that I havent been swimming since I was > > 11 years old because of this disease. Anyway, I have read through > > some of your stories and am glad to hear that there are others in > > the same condition as me. > > > > Thank you! > > CHARLENE > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 G,day What part of australia are you from? I have never heard of " silver colloquil " and my son has had numerous operations for removal of c-toma. We live in Central Queensland. deb New member > Hi team, > > My name is , I live in Australia. Have just had my 5th > cholesteatoma removed 1 month ago. Is there anyone else who has had > numerous removals, if so, I would appreciate hearing from you. > > BTW, does anyone have any details on the effectiveness of 'silver > colloquil' in preventing these c-tomas? > > Regards > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Hi I think you're referring to 'colloidal silver'. I came across mention of this for the first time only recently where someone on another site said they were given this treatment for ear infection back in the 1930s. I'm sure a few people on this site have metnioned another silver product - silver nitrate - before. It seems like colloidal silver was used as a an anti-infection treatment before antibiotics like penicillin were developped. Ctoma is made worse by infection but isn't actually caused by a virus or bacteria so one wouldn't assume it could be prevented. My own feeling is that anyone who has had a serious ear disease like ctoma, should really ask a doctor's advice before putting any chemical into their ears. I did look at couple of web pages regarding colloidal silver. Most seem to be commercial 'alternative' sites. But I saw these: one basically says the stuff is useless and risky and the other is more favourable. http://www.quackwatch.org/01QuackeryRelatedTopics/PhonyAds/silverad.html http://smart-drugs.net/ias-silverSouth.htm Phil BTW, does anyone have any details on the effectiveness of 'silver colloquil' in preventing these c-tomas? ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.638 / Virus Database: 409 - Release Date: 21/03/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 , While I haven't had any experience with the doctors on your list (I'm in Virginia), my daughter was 4 when she was first diagnosed with congenital ctoma. I also had congenital ctoma as a kid, but mine wasn't found until I was 8, and the damage was done (I'm hearing impaired on one side, and wear a hearing aid now). I believe that the best option available to you is the one that leaves as many avenues to normal hearing open as possible. CWD pretty much means an end to normal ear function, if I understand it properly. My daughter just completed her second ctoma removal surgery in March (first one was July last year), and had an exploratory tympanoplasty (performed via the ear canal, not by behind-the-ear incision) both times. She still has a very, very good shot at normal or near-normal hearing when all this is over, assuming no further ctoma recurrence. Speaking from experience myself, it's a hard choice between one radical surgery that should (but not always will) put an end to ctoma completely, or having multiple surgeries that leave open the chance at normal hearing. My parents choose the multiple-surgery route, but my hearing was a goner pretty much from the start, and most of those multiple surgeries were for reconstruction, not ctoma removal (I was lucky - I had no recurrence). Given that I have hearing loss, and knowing how that has played out in my life, I'd prefer to give my daughter the best possible shot at normal hearing that I can - within limits. If she has a third ctoma recurrence, I've got some soul-searching to do before I decide between a third tympanoplasy and a mastoidectomy. Watching how she has bounced back from both of her previous operations, I'd still be inclined to give it a third try, all things being equal - I am fortunate enough to have the financial means and good insurance to make that choice. Of course, all of this depends on the extent of the ctoma in your daughter's case, and on your own situation. Given the choice between hope and no hope for normal hearing, however, I'd go with hope at this point. Best of luck to you and your daughter. -Jeff. New Member Hello, My name is . I have a 5 year old girl that has been diagnosed with congenital cholesteatoma. I have done quite a bit of research on the subject and have been to see a number of different otologists. I live in the New York City area and have been to see the following doctors: Dr. Jed Kwartler Ear Specialty Group Springfield NJ Dr. Potsic Children's Hospital of Philadelphia Dr. Simon Parisier Manhattan Eye Ear Nose & Throat Hospital One of these doctors is a pediatric ENT, the other two are otologists. The pediatric ENT appears to prefer the staged approach with CWU. One of the otologits was leaning towards CWD. Dr. Parisier believes in an individualized approach to the operation. That means deciding CWU/CWD based on the individual situation minimizing the percentage of reoccurrences from the beginning. Has far as I can tell, it appears that Dr. Parisier is my best bet. He has written many papers on the subject. I have read a few and what he says makes sense to me. I think I would prefer a CWD (if necessary) rather than CWU multiple times. I understand, of course, that CWD does not guarantee that there will be no reoccurrences. Has anyone had any experience with him or the other two doctors? Any information would be greatly appreciated. Many Regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 In most case's reconstruction is a very real possiblity when it comes to the CWD, that's why it is the most popular choice with Otoloigist's. Granted there will be some case's where reconstruction is not possible, but would you rather have a go the route by having the CWD which in most case's ends c-toma's return. Think of all those who have been in this group that have had more then 5 op's for c-toma and is still comming back. I had two removal attempts before my CWD 24 plus years ago, I'm glad that the CWD worked out the way it did as I would not want to go through endless op's in the hope of getting ride if this stuff when the CWD will likely take care of it. What's more human? Endless op's or the real possiblity of one and done with the CWD? tom hansen --- Jeff <jlcarter@...> wrote: > , > > While I haven't had any experience with the doctors > on your list (I'm in > Virginia), my daughter was 4 when she was first > diagnosed with > congenital ctoma. I also had congenital ctoma as a > kid, but mine wasn't > found until I was 8, and the damage was done (I'm > hearing impaired on > one side, and wear a hearing aid now). > > I believe that the best option available to you is > the one that leaves > as many avenues to normal hearing open as possible. > CWD pretty much > means an end to normal ear function, if I understand > it properly. My > daughter just completed her second ctoma removal > surgery in March (first > one was July last year), and had an exploratory > tympanoplasty (performed > via the ear canal, not by behind-the-ear incision) > both times. She > still has a very, very good shot at normal or > near-normal hearing when > all this is over, assuming no further ctoma > recurrence. > > Speaking from experience myself, it's a hard choice > between one radical > surgery that should (but not always will) put an end > to ctoma > completely, or having multiple surgeries that leave > open the chance at > normal hearing. My parents choose the > multiple-surgery route, but my > hearing was a goner pretty much from the start, and > most of those > multiple surgeries were for reconstruction, not > ctoma removal (I was > lucky - I had no recurrence). > > Given that I have hearing loss, and knowing how that > has played out in > my life, I'd prefer to give my daughter the best > possible shot at normal > hearing that I can - within limits. If she has a > third ctoma > recurrence, I've got some soul-searching to do > before I decide between a > third tympanoplasy and a mastoidectomy. Watching > how she has bounced > back from both of her previous operations, I'd still > be inclined to give > it a third try, all things being equal - I am > fortunate enough to have > the financial means and good insurance to make that > choice. > > Of course, all of this depends on the extent of the > ctoma in your > daughter's case, and on your own situation. Given > the choice between > hope and no hope for normal hearing, however, I'd go > with hope at this > point. > > Best of luck to you and your daughter. > > -Jeff. > > > > New Member > > > Hello, > > > > My name is . I have a 5 year old girl that has > been diagnosed > with congenital cholesteatoma. I have done quite a > bit of research > on the subject and have been to see a number of > different > otologists. I live in the New York City area and > have been to see > the following doctors: > > > > Dr. Jed Kwartler Ear Specialty Group Springfield NJ > > Dr. Potsic Children's Hospital of > Philadelphia > > Dr. Simon Parisier Manhattan Eye Ear Nose & Throat > Hospital > > > > One of these doctors is a pediatric ENT, the other > two are > otologists. The pediatric ENT appears to prefer the > staged approach > with CWU. One of the otologits was leaning towards > CWD. Dr. Parisier > believes in an individualized approach to the > operation. That means > deciding CWU/CWD based on the individual situation > minimizing the > percentage of reoccurrences from the beginning. Has > far as I can > tell, it appears that Dr. Parisier is my best bet. > He has written > many papers on the subject. I have read a few and > what he says makes > sense to me. I think I would prefer a CWD (if > necessary) rather than > CWU multiple times. I understand, of course, that > CWD does not > guarantee that there will be no reoccurrences. > > > > Has anyone had any experience with him or the other > two doctors? Any > information would be greatly appreciated. > > > > Many Regards > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Hi, Guess I'm kind of in the same boat as your son. I started having hearing problems when i was 36. Over the next two years I went from having near perfect hearing to having a profound hearing loss in the left ear and a severe-profound hearing loss in the right. My hearing fluctuated wildly, but always trended down. I had great hearing aids, but there's only so much they could do. I also learned to speechread and sign. Several things happened (sick Mom, sudden death of my Father, other things)that really drove home the difficulties of dealing with a hearing loss when you're totally surrounded with hearing people. When I was approved for my CI I still had about 50% speech comprehension in my right ear if I used hearing aids and conditions were perfect. I was implanted in my left ear and the implant was activated about 4 months ago. Since then, I've used the HA at times but not full time like before. The sound quality I get from my CI is MUCH better than what I can get with the hearing aid. I can see some advantages to using the HA and CI combination, and I know several CI users who do. Guess it depends on on the individual and how well they work together. I sincerely hope things work out well for your son. Cochlear implant or not, with your love and encouragement he'll do great! -Jeff Clarion 90K & Auria & Hi-Res 12/03 + Claro 311 that occassionally gets used. > Hi Everyone, > I'm new to the group and I'm the mother of an 8-year-old boy with a progressing hearing loss. He is fully verbal and a great hearing aid user. Unfortunately, recently his hearing deteriorated significantly. Now he has severe to profound loss in one ear and moderate to profound loss in the other ear. Although he can still benefit from his aid, his hearing fluctuates severely. Because of the fluctuations he was evaluated for receiving the cochlear implant and was finally considered a candidate. He will have the surgery next month. The CI team told us that he may eventually use both CI and HA. Is there anyone in this group who had been implanted post lingually and using both CI and HA? If yes, could you please give me more info on your personal experience? > Thank You, > Bahareh Vali > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 Hi Jeff, Thanks a lot for your reply. I'm so happy that you are getting much benefit from your implant. I have a few more questions for you if you don't mind! Do you know the reason of your hearing loss? Did the CT scan show malformation of the inner ear? (My son has Enlarged Vestibular Aqueducts and Mondini dysplasia of the cochlea which results in fluctuating loss) How shocking was the CI activation? Are the sounds that you hear now very different from what you heard before? How long did it take for you to understand speech with your CI? At what threshold can you now hear with your implant? How is your hearing in noisy places as in restaurants? Do you enjoy music? I really appreciate your reply. Thanks, Bahareh spot652000 <masha@...> wrote: Hi, Guess I'm kind of in the same boat as your son. I started having hearing problems when i was 36. Over the next two years I went from having near perfect hearing to having a profound hearing loss in the left ear and a severe-profound hearing loss in the right. My hearing fluctuated wildly, but always trended down. I had great hearing aids, but there's only so much they could do. I also learned to speechread and sign. Several things happened (sick Mom, sudden death of my Father, other things)that really drove home the difficulties of dealing with a hearing loss when you're totally surrounded with hearing people. When I was approved for my CI I still had about 50% speech comprehension in my right ear if I used hearing aids and conditions were perfect. I was implanted in my left ear and the implant was activated about 4 months ago. Since then, I've used the HA at times but not full time like before. The sound quality I get from my CI is MUCH better than what I can get with the hearing aid. I can see some advantages to using the HA and CI combination, and I know several CI users who do. Guess it depends on on the individual and how well they work together. I sincerely hope things work out well for your son. Cochlear implant or not, with your love and encouragement he'll do great! -Jeff Clarion 90K & Auria & Hi-Res 12/03 + Claro 311 that occassionally gets used. > Hi Everyone, > I'm new to the group and I'm the mother of an 8-year-old boy with a progressing hearing loss. He is fully verbal and a great hearing aid user. Unfortunately, recently his hearing deteriorated significantly. Now he has severe to profound loss in one ear and moderate to profound loss in the other ear. Although he can still benefit from his aid, his hearing fluctuates severely. Because of the fluctuations he was evaluated for receiving the cochlear implant and was finally considered a candidate. He will have the surgery next month. The CI team told us that he may eventually use both CI and HA. Is there anyone in this group who had been implanted post lingually and using both CI and HA? If yes, could you please give me more info on your personal experience? > Thank You, > Bahareh Vali > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 > Hi Jeff, > Thanks a lot for your reply. I'm so happy that you are getting much benefit from your implant. I have a few more questions for you if you don't mind! Hi! > Do you know the reason of your hearing loss? Did the CT scan show malformation of the inner ear? (My son has Enlarged Vestibular Aqueducts and Mondini dysplasia of the cochlea which results in fluctuating loss) I have Meniere's Disease, but the doctor also said that the Vestibular Aqueducts are enlarged and one side (I think the right side) was at the very upper limit of the " normal " range. Also, there is a history of hearing loss in my family and I've had balance problems and regular middle ear infections since birth. >How shocking was the CI activation? Good question! It was only 4 months ago and it seems like a lifetime ago. It was pretty cool. For a few seconds, speech sounded like " dots and dashes " (as described by Bonnie Poitras Tucker), but then it started forming speech sounds. That is...I could tell it was speech, but I couldn't understand much of it. Other sounds were awesome! I could hear papers rustling on the resk, my kids shuffling around behind me, clock ticking on the wall- all sorts of high frequency sounds suddenly were part of my life again. I was smiling! Outside...it was pretty overwhelming. Traffic noises were hard to handle, BUT I could here some birds making noise in the trees of the parking lot. >Are the sounds that you hear now very different from what you heard >before? You mean compared with my natural hearing before it went ka-put? The CI sounds really different. Not bad, not bad at all, but definitely electronic. The simpler the sounds the better they sound to me through the CI. Last night I was working outside and I enjoyed hearing the insects chirping and stuff like that. It sounds VERy natural to me. Voices aren't bad at all, but some people still have somewhat of a robotic-electronic quality to them when I hear their speech. >How long did it take for you to understand speech with your CI? I could understnad some speech almost immediately, but it was after the third MAPing and using the CI steadily for about 1 month that I really started to understand speech. >At what threshold can you now hear with your implant? The last audiology exam I had was in early March. At that time my thresholds ranged from 15 to 25 dB. (Hoping to be tested again Friday becasue I have a new MAP that's GREAT!!) >How is your hearing in noisy places as in restaurants? Restaurants are a challenge. I have a noise program that helps; using the T-Mic helps; I really need to be able to see their lips, but I can get by on CI input alone. Depends on the place, I guess. >Do you enjoy music? YES I DO!! Classical/instrumental works best, but mixed music isn't too bad. I have some hearing in the unimplanted ear and mixing the residual hearing with CI input works pretty well. I generally hear music better with the unimplanted ear and lyrics best with the CI side. > I really appreciate your reply. > Thanks, > Bahareh > Nothing to it! I truly hope your son's hearing stabilizes and recovers and maybe he won't have to get a CI. I have to admit that I was thinking about your post when I was working outside last night. Fluctuating hearing levels are TOUGH to deal with and I really feel for the young man. Hang in there!! -Jeff Clarion90K & Auria & hi-Res 12/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 Nikki- Hi I'm , I am 24 and just had my second surgery on May 5. I too had problems since childhood. I think I had my ctoma since about 10. There are 2 different types of surgeries a Canal Wall Up (CWU) is more common. If you have a CWU you will need a " second look " surgery in about a year to make sure it doesn't return. It is more common for the ctoma to return when you have this procedure because it is a lesser radical of the two procedures. I am not sure how common it is for it to return, I suppose it depends on how long it has been going on. I had this procedure 5 years ago. The second procedure is a Canal wall Down (CWD). This is a more radical procedure for bigger ctomas. I am not exactly sure what happens but it is supposed to be the last surgery you will need. They somehow open up your ear canal, so that if the ctoma comes back they can just clean it out in the office. It requires lifelong treatment, and you can never get water in that ear again. I had to have this procedure on May 5 because my ctoma came back in the last 5 years. We were planning a CWU actually but I guess it was bigger than we thought. He said that my canal wall was not intact anyway. I am not sure what that would look like? I am trying to get info and pictures to learn what happened to me. I know the facial paralysis sounds scary but don't even worry. The doctors will not damage that nerve. You would know/feel if the ctoma was damaging that nerve, so if it is not being damaged by the ctoma, they don't really have to touch it at all. What happened to me the first time was I couldn't taste right on that side of my tongue for a couple days because they worked around the taste nerve. Don't worry. Also I was really scared so they gave me a valium to take that morning. If you are scared I am sure they will give you one. Anyway sorry so long I just wanted you to know that it will be over before you know it. I was actually feeling fine that very night. You will be fine, and Good Luck with your surgery. too.cholesteatoma , " ladymolson69 " <ladymolson69@y...> wrote: > hi my name is nikki i have had probs with my ears since early > childhood, i am now 25. i was told when i was 15 that i had a polyp > in the mastoid area and it would need to be removed. for many reasons > the surgery kept getting cancelled. well i found out last year that > what i actually have is ctoma and i am to have surgery in a month. > well i am scared.... i am told about possible facial paralysis.. how > common is that? i am also concerned on how big it would be by > now? what are my chances of it coming back? any comments would be > appreciated. i am absolutly terrified (i don't like my ears to be > touched at all) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 NIkki,, I went through similar fears concerning my daughter's c-tome. She had it removed and a complete reconstruction in Nov. at age 10. None of the side effects happned and you can't even tell she had surgery. This is because iit was done by an experinced otologist. The recovery stage can be intse-find out what to expect.This group is great! keep sharing! Sallie, momt o Kara, 11 with c-toma ________________________________________________________________ The best thing to hit the Internet in years - Juno SpeedBand! Surf the Web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Nikki, Make sure your surgeon will be using the "interoperative facial nerve monitor." This is a monitor that they attach directly to the facial nerve; if they get close enough to the nerve even to cause it to send any impulse at all, the monitor sounds an alarm. Your chance of nerve damage is greatly decreased when this monitor is used. When our original surgeon moved out of state and we had to find a new surgeon, he told us MAKE SURE you find an otologist, not just an ENT, and MAKE DOUBLY SURE he or she uses the interoperative facial nerve monitor. There is no reason for anybody to do this surgery without a monitor. Don't be afraid to ask your surgeon about this. If the answer is No, find another surgeon who can tell you YES to these two questions. Good luck, Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 I had a radical modified mastoidectomy (CWU version), tympanoplasty and ossicular chain reconstruction done at the end of Februrary. My taste nerve was cut so I don't have taste on the left side of my mouth, although I think it's slowly coming back. But at the end of April when I had my 2nd post-op follow-up with my otologist, an audiogram showed my hearing to be back in the normal range (low normal, but still normal!) and it was actually better than it had been before the surgery. The doc had said before the surgery he thought the hearing in that ear would probably be about the same afterwards, so I was surprised and pleased at the results! The only difference I've noticed is that loud noises sound much harsher than they did before, kind of like turning the stereo volume up too loud when you have cheap speakers. The doc said I can even get water in my ear now if I want to, although I'm still using swim plugs when taking showers. Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Nikki- The thought of facial nerve damage really scared me to, and had me crying as I left the otologists office after my first visit. However, info on the internet and from this group has led me to believe that doesn't happen often and, when it does, it is likely to heal itself a while. They just have to tell you all the things that can go wrong. The important thing is to get the best surgeon you can - someone who only does ears. Also, my understanding is that ctoma is slow growing so waiting a month shouldn't be a problem. This whole thing is no fun at all, but please know we are all rooting for you le ---------- >From: ladymolson69 <ladymolson69@...> >cholesteatoma >Subject: new member >Date: Thu, May 20, 2004, 11:45 PM > > hi my name is nikki i have had probs with my ears since early > childhood, i am now 25. i was told when i was 15 that i had a polyp > in the mastoid area and it would need to be removed. for many reasons > the surgery kept getting cancelled. well i found out last year that > what i actually have is ctoma and i am to have surgery in a month. > well i am scared.... i am told about possible facial paralysis.. how > common is that? i am also concerned on how big it would be by > now? what are my chances of it coming back? any comments would be > appreciated. i am absolutly terrified (i don't like my ears to be > touched at all) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2004 Report Share Posted June 21, 2004 In a message dated 6/19/2004 9:00:47 PM Eastern Daylight Time, opus_fan@... writes: > > > Greetings all!, My name is Dennis and my doc has scheduled a cat > scan on the 6th of july because he suspects i have a cholestatoma. I > have been having dizzy problems , head pain and equalibrium problems > for 3 months now. But have had bad ears for years. Does this sound > familiar to anyone? Hi Dennis, is your handle named after the Opus cigar? The Cat Scan should show what is going on in there. Good luck. > / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 a, I cant speak from personal experience, but since alcohol is a major depressive I would assume you could take enough to counter-act the purpose of the Lexapro (lifting depression) and then keep going to tip the balance back into a depressed state. If suicide was the intention, as in, if he said I am going to do all this stuff TO die - not in the hopes that I die, but doing this TO actually end my life, then I highly doubt the Lex did anything to cause that unless the thought was there prior. From what I've read and experienced with suicide is that the thought of wanting to die is there a lot, but getting to the point where you make the plan and decide this is what you will do and then decide to put that plan into motion are two different things, as in it still takes a conscious effort to make that choice. Also since alcohol lowers your inhibitions it could have got him low enough to be more uninhibited about doing something to end his life. I dont believe the Lex magnifies the effects of alcohol for all people, but it might for your friend. I am glad that you are seeking help with him and learning and seeking knowledge on your own too. Everyone needs someone like you in their life. ::CORY:: _____ From: ericamia [mailto:ericamia@...] Sent: Monday, September 13, 2004 8:15 PM Lexapro Subject: new member Hi All... i tried to go through archives to see if there were prvious posts on this subject.. but they are so extensive i only got back to about 5000 before i gave up and though i would just ask. My friend is on lexapro and is an alcoholic. He had a very bad weekend and which almost resulted in suicide. is there anything i can read or anywhere i can go to read about these two things in combination. I know you are supposed to be able to drink on lexapro.. but clearly not to the extent he is...add tylenol PM and nyquil to sleep to the mix and you get the picture.... any thoughts? where can i get some answers to my queries.. before you ask we are working on getting him larger picture help... but i want to know if lexapro had anything to do with his suicide attempt and if he stops using other substance whether it can still be effective for him or not. with all my thanks, a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2004 Report Share Posted September 28, 2004 Hi Joleen, Ah..one of my favorite names. I often wondered why I didn't name one of my girls Joleen. Let me first tell you that I'm very sorry that you have so suddenly lost your hearing. Losing your hearing is one of the most difficult experiences a person can go thru because you lose your connection with people and become isolated. Fears step in and before you realize it, you become angry and stay away from anything that requires the least little big of hearing. Your mention of the phone was just one example of that. I hope you have sought support groups like SHHH as this will help you overcome some of the anxious feelings that accompany the loss. You are among friends here who understand and there are many people, probably right where you live, who are understanding about this as well. I don't live in NJ but I'm sure someone will offer the information you are seeking. I just wanted you to feel welcome. I'm glad you found us. You did say you have searched the internet for CI Centers in your area so you are seeking experiences of others. It might help us to know exactly where you are. You did ask about another implanted device. There is a device called the BAHA that can be used by some people who would not otherwise qualify for a CI. Their website is http://www.entific.com/ and you can find plenty of information there. Good Luck with whatever decision you make. We are always here for you. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2004 Report Share Posted October 1, 2004 Keep on it--The side effects began to minimalize for me after about 2-3 weeks. caprinicity <caprinicity@...> wrote: Hi all, I just joined this group. I had been experiencing anxienty attacks at night and the doctor put me on nortriptylene, which turned me into a zombie. I asked for a change and he put me on Lexapro. I'm not doing too bad on it, the problems I'm experiencing with it are some nausea and diarrhea, which I've managed by eating yogurt regularly and I have had to cut down on sugar and caffeine intake, which is probably a good thing. For the most part I have been feeling really good on it, better than I've felt in years. The one problem I've noticed that bothers me, is early evening I start feeling dizzy and really tired. It lasts about an hour then goes away. Anybody have any suggestions for that? Thanks! Bonnie G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 my dr told me at my last visit there's a 20 percent chance that it may come back. so with my luck it will come back. lol. i have hope that it will not come back. my dr. did a remarkable job on my surgury & has kept close tabs on me. JUST LIKE WITH THE RED SOX, I HAVE FAITH !! a very scary procedure i must admit, but all is well now. im dreading to get it in my other ear. but atleast i know what i'll be in for the 2nd time around if need be. i just can't handle the risk of the whole paralization thing!! GOOD LUCK !! > > > Hi all of u ctoma victims! I have an 11 year old daughter who has > had 5 ctoma surgeries on her right ear. I have been scared to death > throughout every one of them. The last couple of surgeries the ctoma > has been very close to her facial nerve. I was scared to death that > she would come out paralyzed. Thanks to God she wasn't. Does anyone > know how long ctoma keeps coming back or does it ever go away??? Quote Link to comment Share on other sites More sharing options...
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