Guest guest Posted May 8, 2004 Report Share Posted May 8, 2004 The British AIH group is www.autoimmunehepatitis.homestead.com Dianne Have > you found > another helpful board? Could you share which one? > I'm always keen to > learn more. > Best wishes > Pam Leeds, England > AIH 2000 ______________________________________________________________________ Post your free ad now! http://personals..ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 Hey , Thanks! I'll take a look at the site you sent in. It would be terrific if they could do it by laser or some non surgical method, wouldn't it? If I thought a break thru was emerging in a couple years, I would wait for it to happen. I have to add that every time you mention U of M, I get a little ripple of excitement! I grew up in Michigan, graduated from Traverse City High School and attended the University of Michigan in 1961 for my Freshman year.. so I just get all nostalgic! I haven't been back to Michigan for many many years but lived in Grand Rapids, , and TC and of course Ann Arbor before moving west. Now I'm in Alaska and that's about as far west as I can get, I guess! Best all! Pam In a message dated 5/25/2004 7:08:13 PM Alaskan Daylight Time, nucleus24@... writes: > > > Hi Pam, > University of Michigan in Ann Arbor is doing research on hair cell > regeneration and someone recently published an article on it. Can't > recall his name off the bat, but just read it within the last couple of > days. Maybe from Audiology Online. You might log onto that site: > www.audiologyonline.com and look in the index for hair cell > regeneration. > Not sure how they do it, but it is being done. The researcher just > presented to his peers at U Mich in May when I was up there doing > research. > > > Nucleus Volunteer > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 small world Pam. I moved to TC in 1978 and my daughter graduated from High school and NMC here and went to U of M for her Bachlors degree. My daughter graduated from TC in 1993 by the way. susan & hobbes michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2004 Report Share Posted June 20, 2004 That depends on the patient's hearing loss. If he/she's severe to profound and have residual hearing, then the stimulation will help. But if he/she's very profound, then it's useless. Regards/ Jerome Pam My pleasure, Pam, Always glad to be of help. It amuses me no end that audiologists are now saying that people should continue wearing hearing aids in a non-hearing ear " to keep the hearing nerve stimulated " HELLO, if you're NOT hearing, you're not going to stimulate the nerve either. And in my case I was without hearing in my left ear for almost 20 years. And had the implant done in that ear, and now hear anything I'm going to hear in that ear. So, have to wonder what the use of a hearing aid in a deaf ear is, unless it's to use up batteries. AND how could you tell if the hearing aid battery wsn't working, d'uh? Nucleus Volunteer Thanks , This was just exactly what I wanted to know. Pam ________________________________________________________________ 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 June 20, 2004 Report Share Posted June 20, 2004 Jerome, Yep! After telling me that I was a CI candidate (in terms of my audiogram), my CI audi also said that she'd like to see me continue using a HA in my right ear given the useful hearing I still have. I not only agree with her suggestion, but this is something I would have chosen to do anyway. Of course, IMO, if the loss in that ear had been profound, it wouldn't make much sense to wear a HA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2004 Report Share Posted June 20, 2004 I think you will know best when you had your implant. Most audiologist recommend stopping HA for few months while getting used to CI. I'm not sure in your case. But maybe you will need to do the same when you have trouble adjusting to CI. Regards/ Jerome Re: Pam Jerome, Yep! After telling me that I was a CI candidate (in terms of my audiogram), my CI audi also said that she'd like to see me continue using a HA in my right ear given the useful hearing I still have. I not only agree with her suggestion, but this is something I would have chosen to do anyway. Of course, IMO, if the loss in that ear had been profound, it wouldn't make much sense to wear a HA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2004 Report Share Posted June 20, 2004 Never wore a HA. Never oculd get any use out of them. My left ear always just picked up distorted garbage. Trish RE: Pam > I think you will know best when you had your implant. Most audiologist > recommend stopping HA for few months while getting used to CI. I'm not sure > in your case. But maybe you will need to do the same when you have trouble > adjusting to CI. > > Regards/ > Jerome > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2004 Report Share Posted June 20, 2004 Have you been to the doctor or audiologist for proper diagnostic? People here will understand more and would know what to tell you if they know what kind of hearing loss you have. Regards/ Jerome Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2004 Report Share Posted June 20, 2004 I've had a hearing loss for 30 years, since I was ten. I've been going to different audiologists all my life, whoever was the audie at the blind center at the time (I'm also legally blind). In the 90s, as it turned out, my hearing started to fall. I kept asking doctors and audies to refer me to an CI doctor so I could look into it. But they all kept saying I had too much hearing (that's waht they thought). they kept relating the problems I was having to my 'condition'. Anyway, I finally got a referral in 2001 and underwent the testing for CI candidacty - audiogram, ABR, ENG, CAT scan. the first medical team was also overly concerned with my neurological condition, rather than my hearing loss in particular. This is why the second time up to bat I'm covering all bases. Trish RE: Pam > Have you been to the doctor or audiologist for proper diagnostic? People > here will understand more and would know what to tell you if they know what > kind of hearing loss you have. > > Regards/ > Jerome Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2004 Report Share Posted June 20, 2004 Hi Trish, I also went for CI doctor and was told that I have much hearing, though I have some frequencies on profound level. So I am waiting for speech test. In your case, are you severe to profound? Because if you are below severe to profound you are not a candidate. If severe to profound, then tests will know. Regards/ Jerome Re: Pam I've had a hearing loss for 30 years, since I was ten. I've been going to different audiologists all my life, whoever was the audie at the blind center at the time (I'm also legally blind). In the 90s, as it turned out, my hearing started to fall. I kept asking doctors and audies to refer me to an CI doctor so I could look into it. But they all kept saying I had too much hearing (that's waht they thought). they kept relating the problems I was having to my 'condition'. Anyway, I finally got a referral in 2001 and underwent the testing for CI candidacty - audiogram, ABR, ENG, CAT scan. the first medical team was also overly concerned with my neurological condition, rather than my hearing loss in particular. This is why the second time up to bat I'm covering all bases. Trish RE: Pam > Have you been to the doctor or audiologist for proper diagnostic? > People here will understand more and would know what to tell you if > they know what > kind of hearing loss you have. > > Regards/ > Jerome Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2004 Report Share Posted June 20, 2004 Hi Jerome, I'm profoundly deaf in my left ear. And the part aobut frequencies and ptiches. My right ear is passable, though far from good. Probably moderate. I think it usually took over the hearing . What reads on the audiogram doesn't match what I'm actually hearing. It's really weird. the medical people are astounded. I am a candidate for the Ci. That's been decided by 2 medical teams and a bunch of tests. I just want to be sure it's the right thing to do and taht it will give me hearing and improve my communication skills. Trish RE: Pam > > > > Have you been to the doctor or audiologist for proper diagnostic? > > People here will understand more and would know what to tell you if > > they know > what > > kind of hearing loss you have. > > > > Regards/ > > Jerome > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2004 Report Share Posted June 20, 2004 Jerome, What said obviously makes your response moot. What about pre lings (and never wore aids) who got a CI in later life? Not good idea to make general assumptions because they usually get proven otherwise. *---* *---* *---* *---* *---* A conscience is what hurts when all your other parts feel so good. -- & Gimlet (Guide Dawggie) Portland, Oregon N24C 3G 8/2000 Hookup rlclark77@... http://home.comcast.net/~rlclark77/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 In a message dated 7/3/2004 4:28:22 PM Alaskan Daylight Time, nucleus24@... writes: > What was the reason for HEI suggesting implanting the non acoustic > neuroma ear? Because they think it might come back, or because they fear > the auditory nerve is damaged in some way. > > Take care, They said that the best results have been proven with the non AN ear. Now I'm thinking bi-lateral.. :-)) Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 In a message dated 7/3/2004 4:28:22 PM Alaskan Daylight Time, nucleus24@... writes: > Get thee to a Dr. SIX years!! Yikes. I know we all get tired of > hearing that " nothing can be done, learn to live with it " But if you > have balance issues, maybe something new can be done. I really get around very well.. I've solved my own balance problems by challenging myself. One would never know I have balance issues.. because I compensate and also set boundaries and take care of myself (don't get too tired or too stressed etc). I'm never dizzy but have had a continual *swimmy* feeling, kind of altered state feeling ever since my AN surgery. This is one of the reasons I have been thinking that I would rather have the CI on the AN side so as not to upset the applecart on my *good* side. However for all I know I don't have balance on either side.. :-) Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 denise my last CI surgery the doctor didn't cut any hair at all and the incision was so small that i was able to heal quickly but i was able to shower and wash my hair 48 hours after surgery i was so happy to hear that because the first CI i was told to wait i think 5 days i NEED to wash my hair ... it's a me thing i had no problems and the many other patients before and after me all healed fine susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 In a message dated 7/28/2004 5:45:56 PM Alaskan Daylight Time, stargazzingnite@... writes: > denise > my last CI surgery the doctor didn't cut any hair at all and the incision > > was so small that i was able to heal quickly but i was able to shower > and wash my hair 48 hours after surgery > i was so happy to hear that because the first CI i was told to wait i > think 5 days > i NEED to wash my hair ... it's a me thing i had no problems and the > many other patients before and after me all healed fine > > susan all good news and thanks! I was mainly wondering if it is still possible to rest one's head on that sink thing that beauticians use for washing hair and also if the heat from the hair dryer damages the implant..? Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 , What type (make) of implant did you have? Eli stargazzingnite@... wrote: denise my last CI surgery the doctor didn't cut any hair at all and the incision was so small that i was able to heal quickly but i was able to shower and wash my hair 48 hours after surgery i was so happy to hear that because the first CI i was told to wait i think 5 days i NEED to wash my hair ... it's a me thing i had no problems and the many other patients before and after me all healed fine susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 In a message dated 8/9/2004 9:01:48 AM Alaskan Daylight Time, justagram14@... writes: > > Sounds like you are well on your way too. How exciting it is to read the > great messages of the members just starting the journey. We'll be thinking of > you and good luck! > > Alice > Thanks! I'm feeling all the support and it's great! I'm very hopeful! Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 In a message dated 9/4/2004 5:00:21 PM Alaskan Daylight Time, nucleus24@... writes: > November, good month to be implanted. Will you be flying to Seattle > for the surgery? Gives you time to recover, and NOT shovel snow. > Best wishes. > Thanks for the well wishes. The ear they want to implant has an intact nerve. The ear they don't want to implant if the AN ear which according to the MRI looks like it has at least part of the nerve but they can't be sure it's enough. ooohhh you're right .. and since I am the main shoveler around here, perhaps I should change that plan and wait for spring.... nottttttttttttttttttttttttttt! How long before I am able to shovel snow does anyone think? Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 In a message dated 9/4/2004 6:33:17 PM Pacific Daylight Time, plsav42@... writes: How long before I am able to shovel snow does anyone think? in seattle,, next to zip.. but if it does,, i will know who to call to shovel my driveway! Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 In a message dated 9/4/2004 8:16:56 PM Alaskan Daylight Time, spottedlee@... writes: > In a message dated 9/4/2004 6:33:17 PM Pacific Daylight Time, > plsav42@... > writes: > How long before I am able to shovel snow does anyone think? > in seattle,, next to zip.. but if it does,, i will know who to call to > shovel > my driveway! > > Lee No....lol! I'm in Anchorage.. lots of snow here. Last year we had 8 foot snowbanks. Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 In a message dated 9/4/2004 9:24:58 PM Pacific Daylight Time, plsav42@... writes: No....lol! I'm in Anchorage.. lots of snow here. LOL,, i know,,,in Seattle, it is rare but possible to have snow in November,, i was just kidding about my driveway! Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 I don't know how to use this other than reply to someone else. This would be a question to throw out to all who might have similar situations. I have my left ear implanted. My right ear has a little hearing. I can hear myself talk, lawnmower, leaf blower when I use them. Some sensations of noise...But I woke up two days ago and my voice is muted and " split " . I hear myself in two tones - high and low. It's making a mess of speech. I think it is " inside " me. I thought maybe allergies and perhaps a stopped up Eustacion tube? I can't stand to listen to myself, but I can hardly hear myself anyway!! Does this make sense? I did take an Allegra D, hoping a decongestant might clear things up. No help so far. Does anyone else have this problem? I have had a few episodes in past years where it last moments or even a couple hours....never like this...What's going on with me?! Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 Joan, I've experienced the same problem. My last audiogram showed fluctuating hearing (between severe-profound and profound) in my left ear. I have always experienced popping in my ears. I didn't give it much thought until someone on another e-mail list suggested that I may have problems with blocked (or partially blocked) Eustachian tubes. After seeing my doctor, he did a tympanogram and found abnormal pressure in my left ear. He prescribed 10 milligrams of Zyrtec for me once a day. Ever since I started taking it (a month ago), I notice more clarity in what I'm hearing. It's not enough to help me understand speech but I can tell that there is a difference. I don't know if a change in allergy medication will help you but it might be worth looking into. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 In a message dated 9/20/2004 4:05:23 PM Alaskan Daylight Time, nucleus24@... writes: > Hi Pam, > Thanks for the info. So you don't have to keep commuting between > Seattle and Anchorage. Whew. Long WALK. > Things are happening soon, right? > You go girl. > > > Nucleus Volunteer > definitely a long walk! lol! Thanks ! Amazing what technology can do isn't it? I'm sure the audi here can be on the phone with the audi there, should there be any problems during mapping. When I got my Impact hearing aid several years ago, it had to be mapped similarly to a CI. The audiologist had my aid hooked up to a monitor and the people at the company could help him with mapping over the phone.. there were so many variations. Of course at that time it was very difficult for me as I didn't know how to describe what I was hearing.. the terminolgy was out of my grasp.. I just kept telling him he sounded like a " munchkin with a mouthful of cotton. " We never got beyond that and hearing aids just can't help with speech discrimination with profound sensoneural hearing loss no matter how intricately they are programmed. Now I am more versed in words used to describe the hearing that one gets from mechanical help such as HAs and CIs. Good thing! :-) Pam Quote Link to comment Share on other sites More sharing options...
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