Otolaryngologist in the UK?

[JeWeL41]

I hope that someone can help me to find an Otolaryngologist in the UK (preferably South) as my GP wants to refer me but can't seem to find an AN specialist. I HAVE NOT been diagnosed with AN but on 25th Nov 2006 I suffered sudden hearing loss in my left ear with 3 types of tinnitus, distortion, recruitment and hypercusis. Some imbalance but not dizziness or vertigo and strange sensations on my left cheek near my nose (but not pain). I had previously had very mild hearing loss detected two years previously and two bouts of labrynthitis a year previously and six months previously. I have all these symptoms still   except the distortion and they are getting worse, I wear a hearing aid but it no longer masks the tiinnitus and my speech discrimination is worse though my pure tone hearing loss remains the same (average 38 decibels across all frequencies up to 70 decibels at high frequencies) I have left sided headaches most days and often have earache on that side or throbbing pain in that ear. I am not dizzy but feel that I 'stumble' to the left and I can no longer go up ladders or stand on chairs to put up displays in my classroom. I had an UNENHANCED MRI scan in December 2006 which showed nothing. ENTs locally are not interested - they have diagnosed me with Idiopthic Sudden Sensorineural Hearing Loss and until recently I presumed that they knew best. I did ask for an enhanced scan but was told it was not necessary. At no point has anyone but my GP mentioned that this could be an AN.

If anyone knows of a good otolaryngologist in the UK that my GP could refer me to I would be very grateful. Thank you

[Esperanza]

Hello J,
How are are you doing? 
Really hope you don't have to 'really' join us on here.
I would say in your position I would pay privately to see someone and request a contrasted MRI (as you will probably note from other posts on here contrasted in the only one that shows AN's accurately).   If i see any consultant names based in the south I will let you know.  Alternately you could try
http://www.drfoster.co.uk/public.asp. 
I am sure someone on here may be able to help (Derek?!!).

[JeWeL41]

Hi, you found this site too! How are you? I'll try the link you suggested. thanks

[ppearl214]

Hello JeWel and welcome.  Esperanza makes a great suggestion in noting Derek... please also look for Tony.... our best 2 cheeky blokes we have (well, other than my #1 spouse!) and they are very knowledgable of facilities in the UK.  What area of the UK are you that would help us to narrow down the suggestions for you?  South as in Brighton or Bournemouth or ? ? ?

Please be well!

Cheers!
Phyl

(ok, folks, stop giggling at my cheeky talk.  My spouse taught me too well!  Buggers!)

[JeWeL41]

Hi, actually I am in Bournemouth! Think I may have found one from Esperenzas link - Mr Michael Wareing, St Bartholemews and Royal London. He lists an interest as AN!

[ppearl214]

Hi JeWel, well sounds like you are on the right path for you.... and Bournemouth?  Geesh! I get 2 points for that?

I know Bournemouth is quite a distance from London, but I was also told of National Hosptial for Neurology and Neurosurgery
Queen Square London.  If by chance you head into  London, maybe they have someone there to help? I dunno... just a thought.

Be well.... and please let us know how things go.

Phyl

[JeWeL41]

Hi, thanks. London is only 1 1/2 hrs by train so it's ok. I've also sent a personal message to Derek. Thanks for your help and concern. Best wishes Julie

[Derek]

Hi Julie...

I have sent you a PM with relevant info which hopefully will be of use to you.

Best Regards

Derek

[JeWeL41]

I can't believe it! Having been told that my GP has made an 'urgent' referral to Mr Wareing, someone, somewhere has decided that actually I need a routine appointment and no one can give me any idea when that might be. I am starting to feel like a complete fraud and hypochondriac.....but I DID wake up deaf 15 months ago, my head DOES hurt etc etc. Even my husband says I should just wait and that I'm becoming obsessed.

Anyway, I can't wait so I have asked my GP to refer me for a private scan which will cost 500GBP. I have spoken to them and they sound very competent so I am hopeful that this can be done soon.

[JeWeL41]

My GP will NOT refer me for a private scan? He says I should wait to see the consultant as the private scan company may scan the wrong area and anyway the ENTs that I saw in early 2007 said I didn't have anything wrong with my brain! - one ENT said this having read the radiologist report from my unenhanced scan and the others followed suit without looking themselves or re-examining me.

I am seeing another GP tomorrow in the hope that I might convince him. I believe that they think I am a hypochondriac who is doing too  much research and has no right to question the experts. I now feel totally frustrated, confused and angry...as well as deaf....headache....

[Esperanza]

Hello,  Was just wondering how you'd got on with the other GP...
Hope you are ok...
x

[JeWeL41]

Hi, I did't see him!

My mother had an appointment with her GP (different practice) yesterday morning and she mentioned me. He asked to see me straight away, registered me as a temporary patient and did the referral for the scan instantly and faxed it so I am having the scan on Monday. I think the big difference was that he's seen a patient with AN and he knew a lot about it. He asked me lots of questions and was great.

The referrral has been looked at by the neuroradiologist and he has set the protocol agreeing that it needs to be pre and post gadolinium. I will be given a brief overview after the scan on Monday and then the specialist neuroradiologist will look at it on Thursday and write a report. I will also have the scan CD to take away with me.

In many ways I hope they find nothing, I really need to know. At least now I already feel that I am being taken seriously.

How are you?

[Kaybo]

I am so glad that you are finally getting the attention that you need!
Keep us posted!
K

[Esperanza]

Wow!! That is a result! Really glad you will the contrasted MRI at last.

 I think there should be more information given to GP's generally regarding dizzyness, ears, hearing loss and AN awareness.  I do wonder if I had been given Prednisone on that first visit to the Dr. whether it may have preserved some of my hearing...

I have completed my second week back and although I am tired and still not sleeping brilliantly I am coping better with new situations
than even a couple of weeks ago (for instance the supermarket and coping in group situations when it is noisy - can't always hear what people are saying but then talking to others they can't always either - think some of them are deafer than me with 2 good ears -  ha!
Generally though it's much better than it was and I have chosen only to tell a few people so most peeps don't realise anything is wrong now.

Think I am still 'grieving' for my hearing because it was so sudden and profound and despite what the specialist said my balance is not continually improving but up and down dependent on head noise and feeling of fullness but will give him the benefit of the doubt for now!
Wearing ear plugs in both ears to dry my hair and vacuum - this helps with way it seems to affect my 'head noise' and my hearing ear during and after the acitivity  -much more comfortable.  I am missing stereo sound though - love music and it isn't quite the same.

My hubby keeps reminding me that it is only 7 weeks since everything started so it is still early days in the general scheme of things. All in all I get a bit up and down (and down and down sometimes!) but I am slowly getting there...

Will be thinking of you...
xx

[JeWeL41]

Esperenza, you are doing brilliantly. Thanks for your support, I'llk let you know how I get on on Monday - fingers crossed x