Guest guest Posted March 5, 2002 Report Share Posted March 5, 2002 I can only speak from my own experiences but, My hearing loss IS caused from my CMT. Back about 6 or 7 years ago when OVR was putting me through many hearing tests, and before I even knew anything about having CMT, I was told by my Audiologist at that time that I had a very strange pattern of hearing loss, like a hearing loss from disease would show. I had no idea then about CMT, nor had I even heard of it. OVR bought me a very good quality hearing aid for my left ear, which is my worse one, and after numerous adjustments back and forth about 70 miles round trip for me and over a period of about 3-4 years time, and test after test, nothing was going to make that hearing aid work for me, no matter how many adjustments were made or what ever was tried. This is very hard to explain about my hearing, but I do know others feel the same about their hearing loss. It is just so hard to describe how it affects me, but I will try. I told them (dr.'s) for years, It seems like words go in my ear, and somewhere in their travels (the auditory nerve, which is by the way, a peripheral nerve as well) they seem to get jumbled up, or backed up, or lost completely! My brain doesn't get all the words if : #1 there is background noise. #2 if people are talking too fast! #3 if people whom are talking to me have an accent I am not used to hearing, or mumble, or look away while speaking to me, or have no teeth in their mouth, or just plain don't move their mouth much when they talk! I am so sorry this is so long guys, but it is very hard to explain this by putting it into words. I find The telephone EXTREMELY difficult as is any speaker or microphone for me, words just muffle. Oh well, so here it is, hope I have explained it good enough. If anyone wants to talk to me about this subject, feel free to e-mail me personally, or look for me on chat as tina3164. I will be happy to help in any way I can. Tina Tina:-) CMT means (we) Can Manage This! And Quality sharing of living positive lives with our common disease is our goal! Now that's the Gold! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Hi Tina, All the problems you had or have are all the problems I went through, but the differnce between us is, my hearing aids worked. E > > CMT means (we) Can Manage This! And Quality sharing of living positive > lives with our common disease is our goal! Now that's the Gold! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2002 Report Share Posted March 9, 2002 Congratulations , you are one of the lucky ones! By the way, what kind of hearing aid is it you have, brand, type etc....? Maybe that could have something to do with it, I don't know. Mine was adjusted at the office electronically by a machine and to my specific hearing loss, and still didn't help me. Does it quiet background noises for you automatically? Mine did not do this. I was told by the Audiologist who did my Auditory Invoked brainstem hearing test that because of the results, it tells her that the hearing aid will not help me, as I had previously complained. But in all, they are always coming out with new ways to help hearing loss, so maybe someday surgery or something will possibly help me in some way, I can only hope as I am 38 and don't exactly wish to be deaf someday. Thanks for your response, and I am happy for you. Take Care, Tina:-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Hi Tina My hearing aid manufacture is " Siemens " . The model is an " Infiniti 3 LS-ITE + VoiceMic " . I believe out of the four models they make this is second least expensive. Yes I do have what they call voice control switch,(VoiceMic) but it is manually. One position reduces the back round noise. I use it for instance, when I am speaking to someone and I have eleven grandchildren running around in the backround. My hearing loss is what is called " Sensorineural " There is no operation at the time to correct that type of hearing loss. The other type is Conductive Hearing loss, there are some treatments or surgery that might be available for thisind of heaing loss. You have said that an Audiologist did your evaluation. I would hope you would have seen an Otolarynologist (Medical Doctor for ear,nose & throat) to varify the Audiologist report. E Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Hi Tina, My hearing aid is manufactured by " Siemens " The model is " infinity 3 LS-ITE + VoiceMic " VoiceMic is the little stem that controls back round noice, Mine is manual. Some of the models will have what they call a " memory swich " that will adjust your hearing aid automaticly. Like most I also have the volume control. You mentioned that yor evaluation was done by an audiologist and that wwould be proper, but I would hope that you have or would see an Oolaryngologist(ear,nose,throat Medical Doctor) to verify the evaluation and to tell you what the deafness is caused from and would there be a treatment or sugery that might help. I have the " Sensorineural Hearing Loss " . The following a quote from Siemens: Medical or surgical intervention cannot correct most of Sensorineural Hearing losses. The other type of hearing loss is " Conductive Hearing Loss " Medical treatment or surgery may be available for these and more kinds of Conductive Hearing. E. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Sorry for the duplication. I thought I had lost this post, so I did another. E > > > > Outwit! Outlast! We're ALL WINNERS at by sharing > our CMT lives with each other in an upbeat, generous > and positive manner! WINNERS Can Manage This(= CMT) only > here at our 'one-of-a-kind' group! Research has shown > us that 70% of CMT diagnosis is Type 1A. CMT affects children > every 19 out of 100,000 and this disease has spread 62.5% in > the last 50 years alone. is committed to bring you not > only positive sharing and new resources, but research and > regenerative medicine news about CMT as well! > > > > Quote Link to comment Share on other sites More sharing options...
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