And now my ears don't work.

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Ok so had ear issues 7 years ago pre diagnosis and perm vent tubes solved pain and all has been good since. GPA has been busy in a low grade way attacking upper and lower respiratory area - surgery and light meds have solved that so I thought all was good. Oh no. Now I have rampant ear issues and hearing loss at a distressing level. As a business consultant somewhat importnat to hear what people are saying. Damn this disease. Called my physician consultant today, had a fab telephone consultation battery of tests on Monday and then handoff likely to my ENT  genius....god I am so glad I have top consultant team here is London who care, answer their phone and respond at speed. The NHS in London gets GPA treatment right in my book. 

Damn this thing!

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  • Posted

    Did you get on Prednisone right away? I had the same issue and started prednisone about 3 weeks later. Got my hearing back and then started Rituxan. I am meeting with ENT on Friday to find out if i still have senoneural loss. I had it when i first was diagnosed, but it improved and my hearing has improved 90% but i still have some pressure in my hear.
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    • Posted

      Tests showed little hearing loss and so surgery yesterday replaced vent tubes which had come out of one ear 2 years ago has immediately resolved that side - ear drum was physically retracted. Other side vent replaced, on ear drops, nasal sprays and see if it resolves. If not scans next then see.

      Don't go for meds as first port of call as they don't always work and have side effects which I'm not up for.

      Reviews with disease prof and ENT in a few weeks...

      At least I can now hear on one side!

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  • Posted

    Hi Ann  Please tell me which hospital you are at in London.  I am with St Thomas's with David D'Cruz.  He has been marvellous but after 11 years all I have had is prednisolone for 41/2 years.  Each time I have a flare up it takes me 2-3 months to wait for an appointment.  How do I get round this?  I too have permanent ear tinitus and deafness in my left ear. Would be good to know how someone is getting on in England.
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    • Posted

      Hi, I'm under Prof Alan Salama at Royal Free, he's renal but with GPA sub specialty and in my view first class. I'm a bit funny about meds and he works with me to tailor solution. He works v closely with Guri Sadhu for ENT issues. Jeremy George is my respiratory consultant who Guri bought in when it hit my lungs. Guri/Jeremy are UCL and on the difficult airways team - I get surgery in 1-2 weeks.

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    • Posted

      So my advice is to go see Alan himself at the Royal Free (I am Helen on his books) tell him I recommended him! If you google and call the number listed for him he often answers himself. I use Alan as my triage and first port of call and then he refers me off to the others as needed.

      good luck getting a new/better team.

      If Royal free on a go slow pay £150 for private chat at Harley St if you can afford it.

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  • Posted

    Sorry to hear this Ann. Yes a very bad disease. When you relapsed what meds put you in remission? Ive been off work for months...worried getting tear duct surgery now after sinus surgery in Nov 2015. Docs were afraid i would lose my eyesight so i did rituxan treatments..clearly im worse
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