Emsybobs - Inner Ear Disorders Message Board

dizzyblonde1 · 02-27-2004, 12:59 PM

Hi Emsybobs, sorry you're stuck in a bad patch, I'm there with you if it's any consolation. I really impressed that you're managing to keep on working though, I seem to be having days off left right and centre.

I just read your post about going to see Linda Luxon and was worried that my post about migraine may have contributed to your new doubts - I'm truly sorry if I added to any of your concerns and if there's anything I can do to put them to rest then do let me know.

To be honest I was also a little worried about the way you spoke of finally getting rid of all of your doubts and getting a definite diagnosis by going to London. Please don't get me wrong, Queen's square is an excellent centre run by the UK's leading experts and I do recommend it. However I'd hate to think of you going there with false expectations.

Unfortunately it does seem that it is virtually impossible to get a definite, 100% certain diagnosis with the type of symptoms we have. Specialists, no matter how good, make diagnoses on the basis of probability and then response to treatment. In Ilia's case for example, Linda clearly thought Lab was her most likely diagnosis, especially in light of her improvement following increased activity. The VRT does seem to be working well for her which is fantastic, and will confirm to Linda that her diagnosis is correct.

I'm not trying to put you off going to see her, I'm sure you would come away with lots of useful info and reassurance. However it does seem that unless test results indicate a central problem, virtually everyone is sent for VRT as the first line treatment before any other options are considered. As you have already started VRT and have been referred for your official training by what seems to be quite a clued up ENT, I am unsure as to what you would stand to gain in terms of treatment by going to see Linda at this point, and I'm sure the cost would be considerable.

Sorry if that confuses you more, I'd just hate to think of you coming away from a consultation disappointed at just having been recommended to do VRT and feeling as though you'd wasted your hard earned cash. It may be far better spent further down the line if VRT doesn't give the improvements you'd expect.

Good luck with everything, and I hope the bad patch passes quickly,

Emsybobs · 03-01-2004, 05:09 AM

Thanks for your input dizzy blonde. Firstly no I have only just seen your post so it wasnt a factor in deciding about London. I have been away for the weekend so have not been on healthboards.

I do see where your are coming from but I wonder if you are a little in this frame of mind because of your recent diagnosis. I must say the MAV diagnosis for you shocked me. But I see completely that London can only go from what they find then if no success with VRT, suspect MAV.

MAV seems a v grey area to be honest. London ruled out brain etc for you and decided on VN. The only other thing they could diagnose would be MAV if no success with VRT. So in effect as you say it does not show incompetence on their part.

I know what you mean about never getting a firm diagnosis but I want the best and most accurate I can get. Yes my ENT is pretty clued up but my ENG is normal so in effect his diagnosis is guess work. I know that the testing in London is so much more accurate.

Even to properly rule out brain will help me dizzyblonde. Ilia had a v positive experience from London and I know you did too - and even though they now suspect MAV - at least they have to come to this conclusion - at least they followed you through your VRT then re-evaluated. Not many specialists would do that. They have found what is wrong with you in the end - that, I think, is the crucial part.

I know that London will most prob send me away with VRT - but peace of mind is all I want.

I do appreciate your post but this is what I need to do - I need to see the best I can see. I am going largely via the NHS so it will not cost me lots of money.

I hope you are ok - are you now going to try MAV tablets? I do not work all the time by any means by the way - I do supply work. That is enough! And it gives me flexibility.

Thank you xxx

dizzyblonde1 · 03-03-2004, 12:03 PM

Hi Emsybobs, thanks for getting back to me, I did'nt want you to think I was poking my nose, in but I would have kicked myself if you'd paid for a consultation and then felt let down if you'd been sent away for more VRT.

I wasn't saying what I did out of any kind of bitterness or anger at the hospital, I was just concerned for you and wanted you to have realistic expectations about what you were likely to gain from the consultation. A little peace of mind in this situation goes a long way and I totally understand why you want to go. I was just worried that you might be splashing out on private consultations now with the result of possibly not being able to afford it later, should the VRT not work fully (though I think you've got a good chance that it will).

Anyway, for what it's worth, you really should be under the care of a good neuro-oto by this stage in the game, and I still maintain that this is the best centre in the Uk. Good luck with it all and I hope you find the answers you need. Do let us know how you get on, xx

(ps. yes, am currently trying out migraine medication, all a bit slow and time consuming unfortunately as they can't tell for sure that a drug is ineffective until you have been on it for three months, but hey, one down, plenty more to try!!)

willsmommy · 03-03-2004, 02:44 PM

Hi Dizzy,

just a quick question, I gather you have also been to London. Did you have the full run of tests and if so what did they show? Thanks, Ilia

dizzyblonde1 · 03-04-2004, 03:30 AM

Hi Ilia, yes have had the full run of tests which did indicate a "mild peripheral vestibular disorder" (was never given a %).

Please please please however don't let this shake your confidence in Linda and your diagnosis. The fact you had such a positive experience there and that you seem to be responding to VRT is great. I know it must be frustrating to improve as rapidly as you have and then be stuck for a while trying to shake off the remaining dregs of this illness. But really, from where I'm sitting you seem to have come on dramatically and that really is the best confirmation you can get that that your diagnosis is correct and you will soon be better.

Hope it all keeps going really well for you, xx