Can anybody give some names of good neuro otologist in London, possibly someone who is open minded and that listens? (No Dr. S )
I can give you the name of a fantastic migraine specialist neurologist in Oxford? Would that be any help to you?
If so Ill PM you…
Not practical but if you can give me his name and I don’t find anything I will make the trip. Thank you
Prof. Bamiou, who has an excellent manner, who can be seen at http://lhabc.co.uk/ or here at the NHS together with Dr. Charlotte Agrup or Prof Adolfo Bronstein (recommended by Hain btw).
I also recommend Prof. Saeed, UCLH
Thank you, I saw them online it seems like a good team. Have you been there?
They are caring but don’t expect anything revolutionary.
Yes i unfortunately understand that i can’t expect much more but I would like someone more knowledgeable in visual induced dizzy
I was wondering why the change of heart. Just about to PM you because I had thought you were settled on a course of action for the VV stuff. Now I’m reading between the lines and making an educated guess about the visual retraining. Suspect I’m right. Think you have made a sensible choice however having been there, round that block many times, trust you won’t be left too disappointed. Although I have no access to London I’ve seen all sorts of Eye specialists and a top Migraine Specialist neurologist and nobody had any positive answers as to connections between MAV and CI. Nobody seems to know much about it at all. The main trouble with most is they latch on to one or the other as being the root cause and keep sending you off to The Other Type of Specialist. At home we started referring to it as ‘Revolving Door Syndrome’. You can find you are never in the right consultant’s office. So I’ll be interested to hear your experience.
I read an interesting comment by Dr Hain years ago that said most people who experience visual vertigo have some form of reduced depth perception, reduced 3D vision which can occur in people with CI (words in italics are mine not his). Of course the visual stuff for many people is just one MAV symptom which supposedly should be controlled by the preventatives eventually. In fact I think visual vertigo, ie supermarket syndrome, is common with many vestibular conditions from what I’ve read not just MAV. So the whole thing must be difficult to disentangle. Helen
You are correct ! Visual retraining would br my best guess, i found nobody here up to the task so I have to look elsewhere. Dr Bronstein apparently did a lot of research on eye movements/dizziness so he could be a good candidate.
I also need a backup plan in case nothing mentioned works and I want to change meds
Gosh, that is aiming high. Have you contacted his office? Does he actually see patients or is he just into Research these days. I’ve read some of his papers yes.
I found him here, I guess he does
Try him out and let us know your feedback!
Now you gotta rattle your piggy bank real hard. I hope it’s full enough. As he’s so famous and worldwide and being the cynic I am I cannot help wondering if you’ll actually get to see him or just one of his team. I’ve been through this ‘Team’ system before. UK Eye Hospitals operate that system. You spend most visits with a team minion than a couple of minutes with The Master. Still you might be luckier. Helen
If you pay privately you should be able to determine who you actually see.
It will be around £150 a shot whichever … (probably more for initial diagnostic workup)
That little. You sure? I paid triple that (MRI extra). and way away from London and nobody half as illustrious. Oh, and ‘the hour’ turned into 40 minutes on both occasions as it was happening.
If I don’t remember badly Dr S first one was 270. Luxon is 300
That’s including the bulk of the diagnostics? Not per consultation, surely?! How much are their post diagnostic followups per session?
(My definition of ‘shot’ is the steady state followup visits.)
If so that’s an absolute RIP OFF for just a neurologist, they just push pills?! What a gravy train!
No wonder they’ve not cured this yet!
The neuro-otologist was more expensive. Both mine were marked as price for ‘initial consultation’ but did include letter to my GP. Subsequent appointments with the neuro were less in cost, and time length too from memory. Neuro-oto graciously withdrew offer of further attention. (His treatment plan was “take preventatives”. Cost wise, Anything else was extra, Scans, audiogramme, blood tests (if required which they weren’t). All I got was a physical examination, and visual assessment, all carried out in consulting room at initial consultation. Nothing else suggested/offered. No calorific test, no rotary chair, nothing.
So I stick by my £150. What you guys are talking about is the initial hit with diagnostics. That’s normal.
Follow-ups are usually significantly cheaper.
As to your lack of progress with that oto-neuro… ummmmmm.
It was surprising really because he was advertised as a ‘migraine specialist’ or ‘having an interest in headaches’ I remember. Not that was why I picked him. At the time I had no idea I’d be diagnosed with MAV, no idea I could have that. Just pure coincidence not that it did me any good.