Hi, I’m a patient of DR S in Medway. I’ve had MAV for 2 years with no improvement. Another doctor for another complaint is not happy with my diagnosis and lack of progress so has persuaded me to see Proff Luxon as a second opinion. He is concerned that my balance symptoms might be part of my other chronic condition. To get to London will involve a one and a half hour journey to London in a taxi on my own. I am alarmed with the letter I received today warning me that I will have to undergo tests at the Neuro hospital all morning. If these involve inducing spins via rotating chairs , I will be violently sick , alone in London. Dr S did no such tests so why are the London Neuro hospital without even seeing me? I am at the point of cancelling the appointment. If I do go I will certainly refuse to do any tests that will make me feel any iller than I will already feel by the end of such a car drive. Has anyone any experience of a first appt with Proffessor Luxo? Just what are these test?
Hi
I think Blondie and CJL on this board have both seen prof Luxon, so hopefully they’ll reply to your thread soon.
I saw Prof Luxon’s colleague Dr Bamiou at The National in March and am due for a repeat visit next Month. Strangely enough I was thinking of seeing Dr SS for a second opinion as I’ve been pretty crappy recently.
From the testing point of view, she said I was a classic case of MAV from my case history, but put me through the run of the vestibular tests anyway, and they were pretty awful (for me). The worst was the caloric test, but the rotating chair was horrid too. I’m still not convinced the tests were necessary for a diagnosis but they showed up an asymmetry of my vestibular systems. I had my husband with me and went home by tube and train, feeling yucky. But the real bad syptoms started the next day…
I think everyone’s different but it seems to me MAV is a diagnosis of exclusion together with detailed case history. The actual ‘tests’ are presumably to exclude other things, although mine confirmed a vestibular asymmetry but I still had a MAV diagnosis anyway! So I was a bit puzzled. I think MAV can coexist or even cause or be caused by other things e.g. vestibular asymmetry.
Having said that Dr Bamiou was lovely and seemed to know her stuff. I’ve heard Dr Luxon is too, so it’s probably worth you seeing her for a second opinion. Why not actually ask her straight whether the tests are vital?
Good luck
Dizzy Izzy
Hi Fiona, please whatever you are feeling dont cancel the appointment and dont refuse to do the tests…You will 100% regret it after if you do.They will test you for lots of things which will narrow down/identify if anything is going on.If MAV is your problem after all this time then this will eliminate pretty much all the other possibilities…Yes the tests arent nice but different people respond differently to each of them.The caloric test was the worst for me for example but the chair test was harmless, another guy that was down there while I was hated the chair but said the caloric test pretty much did nothing for him. They wont just push you out the door after, in fact they wont let you go until you’re able to.
If you throw up, who cares? There will be others down there in the same boat as you, its actually nice to chat to people who can relate to what you’re going through.Think long term, you will have more knowledge of what you are dealing with
The issue I had with Prof Luxon was that all my tests came back normal/negative so I was sent away with a diagnosis of ‘highly suggestive Vestibular Neuritis’ and a course of VRT…Dr S was of the opinion that if all the tests showed nothing then it probably wasnt VN and something else was at play (ie Migraine) which makes more sense to me
Good luck
Chris
I had all the vestibular tests done at Oxford twice, then at Prof Luxons. She is a very nice lady, very approachable. I couldnt complete the caloric, just did one half of it, I did all the others. I had two letters arrive at my drs. one saying an abnormality was found and the other saying the tests were normal. The final diagnosis was vestibular migraine, I was then sent on to Prof Goadsby where I attended a few times and was given several different preventatives to try.
I had to sit outside for an hour or so as I felt sick, but was able to travel home then and it took 3 hrs to get home. The next day there were no major after effects.
Christine
When I had my testing done (here in Chicago) I was scared beyond belief. I also could not complete all of the caloric testing, but I did survive the spinning chair! I told my tester that I get motion sick EXTREMELY easily and he was able to give me liquid Zofran right in the office. It definitely helped, and had not interference what-so-ever with the test results. This may be something they offer, or something you can ask about. It can’t hurt to ask!
I too think you should keep your appointment. It may be difficult, bit you WILL get through it. When your all done, you can take pride in the fact that you were brave enough something that was scary and made you uncomfortable, because the results you get from the testing will have been worth it.
Good luck!
Sarah
Hi Fiona
I saw Prof Luxon in Nov '08. I was exceptionally fortunate that my relatives took me from Bournemouth to London the night before the appointment, took me there and home again. I had all the tests but couldn’t complete the rotary chair as it was too claustrophobic and the staff didn’t force me to have it. Prof Luxon appeared rushed but she is a busy woman who knows her stuff. All my results were normal and she said my MAV diagnosis was one of exclusion, particularly as I’d had migraine with aura for 30 years. I was exhausted after but then I have cfs as well. I know the anxiety of an appointment experience affects everyone differently but I’m sure it will be a relief for you to get a second opinion. I know if I wanted one I would try Dr S as I have heard how good he is. Good luck with whatever you choose to do.