Hi Molly- So you had both surgeries and neither helped you? Im so sorry to hear that…
Hi Notchoma- Its so aggravating how the 3 have almost identical symptoms! If its a Fistula to do you know how you might have got it? My first VEMP test was normal but Im sure they will recheck it on Thursday… I just dont trust any of these tests anymore. Have you already had a high resolution CT for the SCD?
Of the 3 I really hope its not a SCD… the surgery sounds scary… Im thinking thats not it for me… The doctor asked me if I could hear my eyes move or hear my heartbeat in my ear… I know those are SCD symptoms and I dont have either…
One thing I forgot to ask the doctor is about is tremors/shakey… I always feel like Im trembling/shakey… sometimes I check my hands and they are just a bit and other times its just a sensation in my body… Does anyone else get this feeling? I wonder if its my brain being overworked to keep my body balanced…
I thought i posted on this. But i have the same thing going on. They say, SCDS, fistula or mav. we are trying MAV of course first to see how it goes. I am giving it an honest try with sticking to the diet and taking my meds. So far I had some really good days but now I am back at being dizzy again like I was before. Its worse when I walk outside or if I am around pressure changes. Today i saw a new doctor who thought it was fistula but said he would nto work on it bc there are more adverse side effects such as loss of hearing. I tell you though, i wold rather lose a bit of hearing then be dizzy all the time. They say my Superior Canal is thin but not enough to cause issues. but i dont believe them. I did all the tests and they came out boardline. so i am not convinced about all this. I dont really know what to think. It seems finding a doctor who will actually do the surgery for fistula is hard to find. I am seeing Dr. Carey in July and hoping i get some real answers.
@Notchoma- I had multiple doctors suggest to me that it “might” be a fistula but none of them were experienced enough to be comfortable to diagnosis or operate. Thats why Im traveling 3 hours each way now to see a Neurotologist who specializes in PLF’s. I think its kinda sad I have to travel out of state just to see a doctor. He told me the operation is fairly simple, 1 overnight stay in the hospital, minimal pain, and hearing loss isnt always a problem… if you already have hearing loss it doesnt help so much with restoring hearing.He said the hardest part is the recovery. Complete bedrest for 3 weeks. He actually has pre & post op video’s on Youtube from former patients. I think I’d rather have a PLF than SCDS or MAV.
Ive read that Dr.Carey is a specialist in SCDS if Im remember correctly. Good luck on appointment!
Im with you! I’d rather lose a little hearing and be done with vertigo/dizzy/off balance/naseau crap!
Im so stressed/anxious for my appt on Thursday.
Notchoma has heard from me before because my 13-yr old daughter has been diagnosed with MAV/VM. We went to see Dr. Carey (& Mass. Eye & Ear) as they were experts on SCDS because her high resolution CT scan showed thin bone on right and super thin bone on left with poss. hole. Because their VEMP tests were normal, they said the symptoms were NOT coming from the thin bones. They say her symptoms are most consistent with MAV/VM although recommend she takes the VEMP again at the end of the year to make sure the results are still normal. She has 24/7 dizziness, rocking, feeling likes she’s going to fall, sees with tilted vision across the room (just not up close), is so tired no matter how long she sleeps, etc. She also has other intermittent things: blurry vision, hard to focus, eyes, muscles twitching…
NOTCHOMA: One of the things Dr. Carey said was that one of his jobs when he sees patients is to figure out whether their symptoms are due to MAV or SCDS so I think you will feel reassured after visiting with him. I do agree tho’ that in the back of my mind I keep thinking that the people with thin bones and NO symptoms are not the ones at the dr. trying to find out what’s wrong…!
MALAIKAZ: One itermittent symptom she has is trembling hands. If it happens while she’s writing, she says she feels it affects her writing. I didn’t expect neurological things like this when doctors first mentioned MAV/VM
Oh, I have emailed with a SCDS sufferer who had the dizziness/balance symptoms for a couple of years prior to the other noise-related symptoms beginning. One dr. we saw said that you don’t get symptoms with thin bones, but other dr.s recognize that you can, including an expert on it at Mass. Eye & ear we saw. Also have read of some (can’t remember how many) who’ve had thin bones repaired that’s corrected symptoms.
One thing that seems to be true - no matter how many doctors you see, you can end up with that many opinions as to your problem!
AnneTimes2- Im so sorry to hear about your daughter. I cant even imagine dealing with these symptoms at that age… it must be so hard on you too. I hope she gets better!
Yes, its seem every doctor is a different diagnosis. I believe patients are the best advocates for their health. They should be involved in decisions… because doctors do miss things, think everyone should have the same symptoms, gett burned out, have a favorite diagnosis… thats why its so important that we are knowledgable about our conditions.
So I met with a neuro-tologist (the same guy I met a few years back). Right off the bat within a few minutes he said he suspects that I have semicircular canal dehiscence. It is interesting because 3 years ago I thought he said that there is a small change that I have a PLF. Now he says he isn’t really a PLF guy.
Any ways I’ll update this thread if more news comes to light.
My symptoms include sound induced dizziness, sensitivity to changes in weather and some other visual-vestibular symptoms.