- "Autoimmune disease of the inner ear. If caught early enough, it could reverse the hearing loss, etc. However, in my case it was caught too late. A simple blood test. Damned are the ENT doctors that don't admin ister such a simple, but important test. Treatment is with methodrexate or imuran; predisone, etc."
— CSELENSKI
—EKR60
"All through childhood I suffered from ear infections left and right. After being ignored by my GP and his ENT friends, I finally was able to go see a real ENT who promptly sent me to a specialist at Johns Hopkins in Baltimore. A week and a bloodtest later, it was decided that I was to undergo a transdermal timpanoplasty for my severely damaged right ear, but he also discovered an elevated rheumatoid level, and suggested I go see a rheumatologist who diagnosed me with reactive arthritis, a form of rheumatoid arthritis.
Now, I'm not sure the connection between the two, but when I saw the first topic of this thread, I thought, "Wow. Maybe it *is* true!" Had these blood tests been done well beforehand, I might have been able to catch the RA *way* before it caused me the tremendous pain I have now, and probably will for the rest of my life.
Oh, and a sidenote: even after the TT surgery, I still can't hear in my right ear. I had the surgery because there was some autoimmune response my body was making that attacked the tissue of the timpanic membrane, causing perforation and terrible scarring. The JH specialist believed that by replacing the membrane and trying to treat the autoimmune disorder, I might regain hearing, but we were probably too late in catching the RA. What can we patients, who are afflicted with autoimmune disorders, do to get research done in the field? And who would do the research, an ENT or a rheumatologist?"
—CREHBEIN
"I suffered for years from ear infections and eventually, they became so nasty, that they perforated my ear drums. In January 1999 I was diagnosed with Cholesteatomas and in April and November 1999 I had the tumour in my left, then right, ear removed. At the same time as the surgery on my right ear, I had two procedures carried out, called Radical Mastoidectomy and Tympanoplasty; the root of the infection was removed from, I believe, the mastoid cavity and a new ear drum was built for me. Unfortunately, prior to the surgery, my hearing in my right ear was reduced to 20% and as a result of the surgery, I am now left with only 5% in that ear.
The deafness I can cope with (I have only 40% hearing in my left ear this being also due to sensori-neural hearing loss - work induced), but I am now so relieved that the pain and constant disruption to my life, previously caused by the persistent ear infections, is now at an end.
My doctors were, and continue to be, totally brilliant - the surgeon who operated is marvellous and I have two-monthly check-ups with him now, for a further 4 months, to ensure things are going smoothly and to date, they are.
I don't know that my problems were caused by auto-immune problems - who can tell now? The ear infections had to start from somewhere, but once they had started, they were feeding the Cholesteatoma, which, in turn, was causing the infections - a vicious circle.
I know that adult-onset tumours are not too common, in fact, they are pretty rare, but hopefully that is now a part of my history, something I can live with but put to the back of my mind, and I hope I can now move forward, continuing to cope with my deafness as I do now."
—KAZZY39
"It is difficult to think that if caught in a very short time frame or 'window' as my Otolaryngologist put it (it seems anywhere from 2-5/6 months at the most and just think about it: in this time frame, one is getting in to see an 'ENT', getting a hearing test, getting all kinds of scans, blood work-up -- if the person is a good Dr. and all this takes time that I can see how it is easy to miss the time period if one is uneducated about AIED and I think they have to try to rule out all other stuff too and by then who knows how long all this takes -- and I am not making excuses for
