I was told I needed grommets fitting but as I did not meet the criteria I would have to pay privately. This I did and for 6 months I could hear. I have since lost my hearing again in my left ear and been told once again I would have to pay out
privately. This I can not afford to do, so I am going to try a hearing aid which they don't think will work because of nerve damage. Has anybody any advise. I also have blind spots in my eyes from vasculitis & beginning to feel a bit isolated.
Hi, I lost all the hearing in my left ear due to WG. I now have cross over hearing aids - a microphone in my left ear and a transmitter in my right ear. At first I kicked against having to wear 2 hearing aids but they are pretty discreet and my hair covers them - so much easier for a woman! They have made a big difference to my hearing as I can hear noises from both sides now. Life is much better with them. I got them on the NHS and they even provide all my batteries for me free of charge too.
I know how isolated you feel as I nearly lost the hearing in my right ear too - the first time they put a hearing aid into my right ear I burst into tears because suddenly I could hear what was going on and take part in the discussion with the consultant - felt a bit silly but I think he was chuffed as it had made such a difference to me!
Certainly worth trying a hearing aid and if it doesn't suit then at least you know you have tried.
Thanks , this is a way forward, will talk to the specialist.
Are you taking plaquenil by any chance?
No, I can't blame drugs.
Hi Val
I too lost my hearing through my vasculitis. I simply don't understand the attitude your hospital used with you as far as the 'not meeting the criteria' bit. It's sadly quite common for WG to affect hearing and I've had grommets inserted and ultimately, a t-tube without a quibble. I'd be looking to move consultants if it were me in your position.
I also have a blurry patch in one eye (a serous retinopathy) either as a result of the vasculitis itself or due to heavy steroid bombardment. Sadly mine can't be corrected plus I'm developing cataracts which are also probably steroid related.
Having a rare, life-threatening and incurable diseases daunting and lonely at the best of times but please don't ever forget you're still 100% you and are entitled to receive the highest possible standards of care under the NHS. If you have feelings of isolation at any time please reach out to people within V-UK or here as we're all part of this very exclusive and privileged group where support and friendship is on offer 24/7 
Feel free to message me directly if you wish.
Healthy wishes.
Martin
Thanks for your reply, I find this site has really helped emotionally. It's nice to know there are other people who understand & are going through the same problems. I can't blame the hospital I have had excellent care from them, It is Suffolk Health who set the criteria.
I'm sorry if I sound a little angry but that is simply RIDICULOUS! I suffered just the same as you. My ear problems were a taste of things to come as they were the first manifestation of my Wegener's. This goes back a long time but I had grommets / t-tubes very early on (and have had plenty since). This has NEVER once been questioned by ANYONE. If you continue with pressure in your ears you are likely to suffer more nerve damage. They have to address the problem!
I honestly think your best course of action is to kick up one hell of a fuss. PALS at the hospital to start with. Phone ASAP and then write. Your GP needs to be 'educated' and while you're at it you MP should be made aware. A letter to the grinning idiot who happens to be Health Secretary might not go amiss too!! If anyone tells you at any point that the NHS is a free service then politely and assertively tell them to get st*ffed. Simply not acceptable. I know you may not feel much like doing this - maybe a friend or family member. If that's what you end up doing then makes sure it's someone capable of being really stroppy!! Trust me, I would love to do it! haha
Anyway, good luck ..... don't roll over and don't them play politics with your health! Keep us posted!
To Valwood,
I am a little bewildered as to how you did not meet the criteria for a grommet to be fitted without having to go private. Since my Wegeners was diagnosed in 1996. I have had 4 fitted over the years to my right ear. Since the last grommet came out, it has been decided that another would not be beneficial as I now have a perforated ear drum. I am virtually deaf in my right ear now. I have been struggling with the hearing in my left ear, mainly due to Tinnitus. I now have an aide to help with this. My main point being is that all the treatment I have had at Addenbrooks since the 1994, has all been given on the NHS.
I share many of the sentiments above particularly that I am FURIOUS that you could be told you are not eligible for grommets. I have had grommets in both ears which have helped relieve the pressure from damaged Eustachian Tube. I also have a hearing aid as I became totally deaf in one ear shortly after my diagnosis in 2006. All this free on the NHS which is no more or less than any of us is entitled to. The people that told you that you should pay should be strung up and certainly should not be practicing medicine in this country.
I hope you can find the strength to complain in the strongest term to the GP surgery or hospital that made this decision.
If you need any help with this please feel free to message me privately.
All the best - Lisa
It is not the Drs fault, but apparently Suffolk Health has set the criteria & vasculitis is not included. But many thanks for replying
Hi. I had similar hearing loss problems during and after myWG diagnosis. I did the rounds at the local hospital and was told that 'your hearing has got worse, we may see you again in six months or so'!
I complained and was fitted with grommets about a month later which solved most of my hearing problems.
I hope your problem is soon resolved. ATB
I just need to convince Suffolk Health to do them on the NHS !!!!!!!!!
I'm feeling low. I have GPA which has affected my kidneys, heart, hearing, sinuses also have vasculitis in both eyes.
I have recently been diagnosed with vasculitis in my lungs. I am being treated with Cyclophosphamide, steriods etc.
Sorry but 'Tummy Troubles' again
hi just wondering
Am about to have my first Rituximab infusion,what can i expect? How long do infusions last? What do you have with them?
