Thanks for support - it could be Menieres!

[JeWeL41]

Professor Ramsden was brilliant. He is certain that I do not have AN. He says I do have a vascular loop but so do loads of people and he would consider this only as a last resort to be responsible for my problems.
 
The best thing is that he went over my entire history and he believes that I have Menieres Disease. Unlike all the other ENTs he says my previous hearing loss and vertigo attacks in the years before the sudden hearing loss are related. He says my audiogram is not typical and I have more pain and less vertigo than typical menieres patients but he feels I'm far more likely to have 'an uncommen manifestation of a common problem', than an uncommon problem. I saw him privately but he has scheduled me for tests on the NHS in Manchester and says i won't have to wait long. He says the tests can give a definite answer. They will be balance tests, a cochlear dehydration test which involves having a hearing test then drinking Glycerol and having another hearing test two hours later, and a cochlear test where an electrode is put into the cochlea through the ear drum under local anaesthetic and a graph of electrical activity is recorded. He also believes that I have a migraine syndrome as well and is referring me to a local neurologist. I told him how dismissive my GP has been and he said 'he won't be after he gets my letter'. He is starting me on migraine medication too.
 
He also did some balance tests today which I haven't done before and a speech discrimination test which suprised me because my speech discrimination was so bad.
 
I finally feel that I am getting somewhere and although Menieres is not great, it is a diagnosis!

Can I say thanks to everyone who has given me so much support and wish you all well.

[Debbi]

We'll all be keeping fingers crossed for you.  It's a relief to get a diagnosi, isn't it?  Let us know what you find out afer your tests,

Wishing you all good things!

Debbi

[sgerrard]

Excellent. Ramsden is the man!

"Far more likely to have an uncommon manifestation of a common problem, than an uncommon problem" is a great way to put it. It sounds like he is right on top of it, you will be taken care of now. And "ouch" for your GP, when he gets that scathing letter!

I met a guy at our local ANA meeting last time, who joined us because he has Meniere's disease, not an AN. His symptoms were remarkably similar to our ANs; it is basically like having an AN, only without the tumor. I can't remember what treatments or medications he did, but he said it was well controlled now, with only very brief occasional flare ups.

So congratulations on getting somewhere with your mystery. Feel free to stick around on the forum, there are several non-AN members in the same boat, having similar symptoms without the actual tumor. The balance and hearing sections will still be quite relevant to you. We should really be the "ANs and all other wonky head causing diseases and mysterious head symptoms without a diagnosis" forum.

Best wishes,

Steve

[JeWeL41]

Thanks Debbie, and Steve. Everyone on here has been great and you're right, for me it certainly seems to be a case of all the symptoms of an AN without the tumour! I'll certainly keep on this site because everyone is so supportive. In a mad way I'm even looking forward to the tests so that i can finally tell people what i have instead of saying 'well I woke up deaf one day and no one seems to know why' 

[Nancy T]

Hi Jewel--congrats on finding such a good doctor. He sounds like he's up on the latest--knowing about the migraine connection, testing to confirm the Meniere's, etc. Where do you live?

Nancy T.

[ppearl214]

JeWeL, well, finally getting some answers and hope you are doing well today!  Keeping fingers crossed that you FINALLY get finalized answers you seek... and you know I'm cheering you on from across the pond.  BTW, slight issue with the plane tix (B.A. really messed us up) and rebooking... will advise of the details. Already told the bloke we are doing coffee/high tea!

Hang in there and plu-eeeeeze keep us updated! Hang tough..

xo
Phyl

[JeWeL41]

Hi Nancy - I'm in the Uk in Bournemouth.

Hi Phyl - terminal 5? 

Will definately keep you posted. I don't have the spinning vertigo any more but I still have everything else and am a bit more 'foggy'! Prof Ramsden has told me to stop all medicaton so that when I have the tests the results are not masked in any way.

Take care

Julie

[tdworkin]

I just read this page and am curious... did you have an MRI to rule out the possibility of an AN?
My GP didn't take my early symptoms seriously either. (The tinnutis, imbalance, diminished hearing.)
I finally had to insist-several years later- that there must be something to all these things, especially when I could no longer hear the crickets with my left ear.
So, sounds like you are in for tons of tests.
I hope everything turns out A-OK for you.
Be cool, JeWel!
T

[JeWeL41]

Hi, long story but yes I've had two MRIs now and he's sure it's not an AN. Its been three weeks since I've seen him and disappointingly i have not heard from him and he has not yet written to my GP as promised so i must chase this up. I've had some grim vertigo and imbalance lately and my tinnitus seems to get louder by the day so I'm really keen to get on with the tsts and maybe have some medication that might help.