I am 70 years of age with CSS and have become partially deaf over the last 3 months. Following tests at the ENT department the cause has been diagnosed as excessive fluid in my ears. I have had temporary hearing loss, associated with infections, over the past few years but not for this length of time before. I continually have blocked sinuses, exasperated by a polyp in one nostril, and believe this is the cause of the ear infections and main contributary factor for the excessive fluid.
Insertion of grommetts has been advised but while waiting for an appointment I would like to know if other adults with vasculitis/CSS have had this treatment with any success, particularly over the long-term?
Written by
Derek
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I had grommets when I was about 50..I have CSS. My hearing improved slightly, but I did eventually develop polyps in my ears and nose and had them removed under anaesthetic. After these treatments, things were better for ayear or so, but I did eventually have a really severe infection for about 9 months and was told the grommets were infected?! So, they were removed and I had to attend a dressings clinic frequently for my ears to be cleaned. I eventually had one hearing aid, which did help. However, after about 12-14 years of all this, I am finally so much better, having had a course of cyclophosphomide, and now take CellCept and prednisolone. I do not need my hearing aid now, although my hearing is not perfect. My local 'Deaf Centre' in LIverpool has given me an aid , so that I can hear the TV better!
When I eventually saw a specialist for my vasculitis, she runs a clinic with an ENT specialist who understands Vasculitis...thus they were both working towards helping my condition.
Can you talk to your CSS specialist along thes lines?
Thanks Pollie, your experience certainly gives me food for thought. I was particularly concerned with the possibility of infection. Post op I will be given a course of antibiotics but from past experience with recurring ear infections it's important to have the correct one from the start. And any infection takes much longer to heal being immuno-suppressed.
I have WG and have had ear grommets fitted in the past but they're not really designed to be a permanent solution. One of mine fell out in a week and a second one in less than three. For long term implantation you should be having T-tubes fitted which is done under general anaesthetic.
They initially helped me by releaving the pressure build up in my ears and the associated pains. They were fitted under local anaesthetic but fell out within a month or so.
I went totally deaf in my left ear 6 weeks ago. ENT initially wanted to wait and see what would happen as he thought not connected with my WG . 2 weeks ago he fitted a grommet under local anesethic as he thought it was fluid causing the problem turned out to be badly infected so anesethic hadn't worked. ( very painful op) . Anyway ENT said hearing should resume in 2-3 days as yet no change! I'm seeing him again next week. After reading various forums and websites I'm sure it's connected with my WG just got my fingers crossed that I'll get some improvement soon.
I have had T-tubes (or 'Shah Permavent Tubes' as they are sometimes known) regularly over the last 25 years. They tend to last about 2 years before they fall out. They make a huge difference. Until I couple of years ago I would always have a GA but was persuaded by my (excellent) Ear Surgeon to give local anaesthetic a try. To be honest, it was less painful than a dental injection.
Thanks to all for your welcome and informative input. My appointment to have grommets fitted is on 2nd Oct. so have time to check with the vasculitis team for more guidance. My thopughts are to have one grommet fitted to see how much it improves my hearing. Derek
Hi Debbie, I can't recall having muffled hearing after the grommets were inserted. My hearing just improved sufficient not to have the TV sound increased, which was previously necessary. I still have varying hearing due to the CSS associated nasal problems. This improves after douching each morning to relieve my sinuses. I have tinnitus, which affects my hearing anyway.
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