Well I went to the London Neuro Hosptial. Did not seen Proff Luxon but her assistant. After cajoling , I took the tests all of which came back clear. The doctor however refuted Dr Surenthiran’s diagnosis of MAV since I did not have an initial spin she feels it is eye to brain vestibular something which I felt too sick to remember. She advocated VRT and to see a CBT lady. So two diagnosis! What do you do? At least both advocated VRT! I’ve started and feel appalling as per usual. Just perseverance I suppose.
Hi Fiona,
That’s really frustrating. I guess the thing to do is to give the VRT a shot and see what happens. If it’s MAV it won’t do much of anything and may make you feel worse without any incremental gains. Steve Rauch will tell you that when VRT makes it worse, it’s practically diagnostic for MAV.
Good luck and hope it does fix things up.
Scott
I went to Oxford for the first ENT tests, they said menieres that had burnt itself out. Soon I was under the neurologist for just migraine as well, letters kept going back between the two consultants, they got more frustrated. So I asked for the ECOG at Oxford. Had the worse vertigo attack of my life, hospitalized and the chap that did it said that had not happened in 20 years but the diagnosis was menieres. Then they changed it to endolymphatic hydrops. I asked to be referred to Addenbrookes at Cambridge to a top man there, took all my notes, he looked at the ECOG and said, no, not menieres, he did a few tests and said it was an inner ear lesion and sent me to High Wycombe where I kept travelling back and forth to do the balance exercises, did those for months, they did nothing.
Fast forward, to Prof Luxon, had all the tests done and two letter went back to my dr. one saying abnormal, the other, normal.
Referred to Goadsby for migraine. Back and forth to London trying different preventatives, nothing worked.
By this time, the consultants letters were more and more sarcastic (my fault of course, that they couldnt find out exactly what was wrong). One even said “I dont understand why these patients insist on a diagnosis”
I have come to the conclusion that they are all useless, and they dont really know what they are doing. At the end of the day, you have to try the stuff and see what works for you, yourself.
Christine
Fiona,
I am so sorry for the conflicting diagnoses. That is very frustrating. I just wanted to say that I was diagnosed with MAV by several docs and I never had an initial spin. I hadn’t realized that was part of the diagnostic criteria. From what I know, one can def have MAV but no spinning even initially.
good luck
Lisa
Sounds like bumper cars! With you being bump-bump-bumped.
At least they didn’t try this surgery and that surgery.