It's lovely to hear from all of you. Well..."hear". Heh heh heh.
I, too, was offered misdiagnoses and prozac, so I wouldn't care that I don't feel well, I guess, or because various medical people thought my symptoms must be from depression. I have often been too tired to be pushy about it but every now and then I would just get pissed off and go back to the fight to get someone to figure out WHAT this was. The last diagnosis I had was eustachian tube dysfunction!!!!!
This time, with the increase in symptoms, I changed my primary care physician to a new guy (the old one was blowing me off) and asked him to give me a referral to a new otoneurologist instead of my last ENT, because I had discovered that an otoneurologist was the best choice for someone with vestibular disorders, and not some ENT who dealt primarily with profoundly deaf children. To that ENT, I was a hobby. To the otoneurologist, I was a challenge, a fun brainiac puzzle which he was able to solve, and I am feeling great relief to be one of his patients. It is always worthwhile to find the right medical care!
over the years, the docs have thought I was malingering; my co-workers are the ones who think I am psycho, because when I have asked them to make allowances for my developing hearing and balance problems, they have been--well--classic cases of inconsiderateness, and it really made me angry. Some of them thought I was faking it.
I am very pleased with this doctor. He is brilliant, and I am extremely grateful that he is so competent. However, acoustic schwannomas are not his specialty; balance issues and vestibular disorders are. He thinks I should leave the tumor alone because he thinks (from his literature review) that if it fills up the cochlea it will stop growing, and I will be able to adjust gradually to one-sided deafness and balance loss. He thinks I should avoid surgery, because that would produce instant deafness and balance issues, and would be traumatic.
I think this plan has a great deal to recommend it, and I don't mind having "slinky" in my cochlea (yeah, we named it) as long as it doesn't get out.
I intend to get a couple of specialist's opinions of what is thought of this agenda. I realize that if you ask a surgeon what to do, he or she will say "cut it out", and if you ask a radiological specialist what to do, he/she will say "kill it".
I also ordered up my five year old MRI to have the second radiologist review it. My suspicion is that "slinky" is there, and the first radiologist missed it. I also plan to visit with my second ENT, who never ordered another MRI, even though my ABR test was abnormal on the right side. I'm not vindictive; I am a teacher. They didn't do their jobs well enough to help me. If I don't tell them what they missed, they will go on preening themselves, thinking they are just the coolest guys since sliced bread, and other people will end up misdiagnosed.
I think I will go dancing this weekend while I still can. I may have to sit a lot of them out, and I may fall down, but so what? I'll be dancing!
