Ear / Hearing complications?

[Lillybweggie]

Hello Friends, I am looking for information from anyone who is having ear problems with wegeners granulomatosis? I have had wegeners for 27 years now, and my many years of ear tubes, now I have a permanent hole in my ear where the tube was. I have lost 30% of hearing in that ear. But now, it seems that I have a build up of fluid behind both ears, but they do not drain. I worry that infection will set in. Anyone have this problem?

[John_Mills Volunteer]

Where are you seen Lillybweggie? It is very concerning you have now developed a permanent hole in your ear. What treatment have you been receiving?

[Lillybweggie in reply to John_Mills]

Hi John_Mills, I have been under the care of a EENT Specialist since 2010. (I lived 4 hours away from 1999 to 2009 and moved after divorce) I say that to let you know that quite a lot of damage was already done with my EENT began taking care of me. The problem with the hole in my ear was caused from having tubes in my ears over many years. In the last year, the tubes were not working properly, and were stuck in my ear. My Dr. didn't want to pull it out in the office and possibly damage my eardrum, so he did an out patient surgery and removed the stuck tube and replaced it in my left ear, and put another in the right ear. But after surgery he said that when he was suctioning the fluid out of my left ear, it was very thick, and took him awhile to get it all. He said that the thick fluid caused the tube to stick in there like glue, but also blocked the tube. After this, I could hear very well, and I was thinking I hope this tube will last awhile. That was done last year Dec. 24th. So its been almost a year, and I'm back to hearing loss, pain, pressure. I went to see my EENT 2 months ago, and he said that the tube was out. But it left a hole where it was. So having this hole where the tube was, is basically doing exactly what the tube was doing. Giving my ear the ability to drain on its own. But the fluid is too thick to drain, so I am not sure what I will do. I have been reading about people getting infections in their inner ear, and its dangerously close to the brain. I believe I will bring some of my information to my EENT and see what he believes my next step should be. Feel free to give me any advice you think would help. Thank you

[LindaMRich]

Yes lillybweggie! Detailed my ear/hearing problems to 2 consultants - diagnosed with some hearing loss (to be expected at age 60!) Given hearing aids which are of no use whatsoever, no surprise there - my issues don't seem to interest them. I am not aware of any holes. .. yet! My concern is that things will get worse - problem I have is I can be fine then one or both ears will block without warning like I dived in a pool & can't get the water out! When it does that its blocked for the day, clears overnight & so on. Currently going through my gp for 'another go' to find help. I am currently on nasal drops, 2 per nostril daily: Nasofan aqueous 50mg. Any pointers to get the correct investigation / treatment would be really helpful!! I hope you thread leads to some useful treatment for you & others. Thank you! 😃

[hellojulie in reply to LindaMRich]

I also have that back-and-forth plugged and then MORE plugged, suddenly. It's so weird that specialists seem to have no idea what's happening in the ears, when it's such a physical thing. I would think a plugged feeling would somehow show up as a physical eardrum blockage, but no dice. Once again, living with these many New Normals of Wegener's.

[Lillybweggie in reply to hellojulie]

Hi Julie, It sounds like you are newly diagnosed. I love the way you say that you are living with these many New Normals of Wegeners. It really took me a long time to accept the fact that things were changing in my body, and I had practically no control. I watched my nose become disfigured by "saddle nose" and I couldn't stand to see my profile. But I have finally come to love myself for WHO I am, and not what I LOOK like to myself. Changes happen to everyone who live long enough to grow old, and I have realized that growing old is a privilege. I thank God each day I wake, even in pain, I have another day to enjoy my family, and friends. Each Birthday is a celebration to me!! Thank you for helping me remember that. When I find out more about our ear issues, I will keep you posted. Blessings, Lilly

[Kenneth]

Hi Iillybweggie, my GPA was diagnosed in 1996. It started with an infection in my right ear I had a major operation & ever since have always had a problem in that ear . I have a perforated ear drum & regularly have infections & fluid running out & the fluid can be felt inside my tubes down my neck. I have another infection at the moment & have been on antibiotics for 3 weeks to no avail. This infection started on the middle of September & the doctor said he would make me an appointment at my local hospital but I decided to ring Stella at addenbrooks who has since made me an appointment there. My specialist at addenbrooks has said in the past that if my infections persists they would consider an operation to stitch up the perforation. I do have a hearing aid in that ear that does help but when infected, the fluids keep blocking it up .

[Lillybweggie]

Hi Linda, Julie and Kenneth, I can identify with each of you. My pre-diagnosis problems were chronic ear infections, mainly in left ear, and sinus infections that no antibiotic would help at all. After being diagnosed in 1990, the treatments took care of all the inflammation in my whole body, so the problems I have now are from wegeners doing its thing over the last 27 years. Things that worked one year, would change as my body changed from the dz, and so another type of procedure of medicine would be done. But Kenneth, the fact that your ears are freely letting the fluid out is amazing! And I think I probable have a perforated ear drum too! But nothing is coming out. Its just blocked my hearing. It makes sense to me that wegeners has done so much damage to my sinuses, and eyes.....and now my ears are taking a beating. One thing I did notice is that 12days ago, I went to my lung dr. because my lungs were wheezing and he did a CXR and saw an area of infection, and put me on antibiotic called doxocycline for 10 days. And my left ear felt like it started to loosen up a bit, and I no longer feel like I can hear myself breath, chew, talk, (like when you have swimmers ear) Now I am back to just having a constant hum of "white noise" in my ear. I want to know what and where is the stuff that is blocking my tubes, hole in my ear, etc. Why is it so thick? What is it? Could it cause infection to my brain? I know that sounds stupid, but people look at me like I'm crazy when I tell them I have "face pain". Even other doctors....that is until they see an xray of my sinuses.....or should I say "lack of sinuses". It blows them away when they see the damage done, and my sinuses are basically a black hole!! Linda, have you seen a Rheumatologist? Since they treat inflammation in the body, limbs, etc. they are usually aware of wegeners, and have ways to treat the problems we have. I have a pc doctor who I see for yearly physicals, immunizations, etc., but for my wegeners I see different specialists because there is only so much a pc can do for wegeners. I see a Rheumatologist for my wegeners, and a Cardiologist for my lungs, and an EENT for my ears and nose, and an eye specialist for my eye issues. All of these doctors are aware of each other and when I go to one, the others are updated. Its crazy!! I would try to find a doctor that knows about wegeners, and try to slow down the destruction of this disease. I have had it for 27 years now, and I am 52. The prednisone I have had to take over all these years is now causing physical problems from its prolonged use. (osteoporosis, beginning of cataracts, etc.) Now, Rheumatologists are starting to use a medication that has been used for RA for years, its called Rituxan. Its a form of chemotherapy, but if it can put you in remission then its worth it. I hope each of you the best, and I will keep posted what happens with my ears. The more we can learn from each other, the better!! Also, I have told some about a Wegeners GPA Forum that has people from all over the world connected....awesome advice and support. We may have similar diseases, but they are also a little different in us all. wegeners-granulomatosis.com...

Lilly >^..^<

[Wendy-m]

Hi there,

I’ve had Wagner’s for around 35 years now and am now 49 years old and have permanent holes in both ears, constant pain no hearing at all in my right side reduced in the left side and active wegners now in the right side that’s just been discovered, usual tests being done to look elsewhere, had 4 tracheostomys and I am struggling with my breathing at present, will have op after my tests which looks to be taking me into the new year now (if I can manage that long of course). Back to original question and yes I get lots of infections but I’m so used to it now it’s just part of life. I had the most amazing ENT surgeon for the great majority of this time but he retired and since have been passed around like a hot potato! I have no confidence in my resp meds dr, I have yet another ENT surgeon who I have only met once and tomorrow am heading to rheumatology for the first time, I am to say the least concerned about things but am greatfull that I have a first class GP who I see every 2 weeks, I don’t think there’s ever going to be a one fits all answer with this disease but hopefully different experiences with treatments could help. Good luck and will be interested to hear of anything you may discover that may give us a little bit of relief from this constant pain x

[Lillybweggie in reply to Wendy-m]

Hi Wendy, I was just going through my posts, and saw this one from you and I . Tomorrow I will be going to my Rheumatologist for my post flare appointment. I have been on steroids for awhile now to take care of this flare, and they are making me CRAZY!!! I usually take prednisone, but since we were going into the holidays, and my inflammation markers were all showing elevated, my Dr. put me on a "stronger" steroid called Decadron. Its for inflammation, and I actually did not start having side effects until after I began tapering down! I'm anxious to get off this stuff, I'm trembling, and feel anxious, etc. But I do feel like my flare is better.....although my ears are not. I have "white noise" almost constantly, sounds like a waterfall in my ears. I hear things that are not there, and I don't hear things that are there....for example.....someone knocks on my door? My cat runs into the other room, so I know someone is at the door!! If I hear something strange, and my cat is lounging and does not move.....well its just my ears making sounds. Anyway, I have some other physical issues I will be looking into after my visit tomorrow about where I am with the flare. I will prioritize them, and when I get to my ears, I will let you know what I find out......Take care! Blessings to you...

[Deedrah]

Hi there, I was wondering if you found any answers to your ear issues. I am in remission now but I continually have this ‘white noise’ in my ears. It clears at night and starts up in the morning. Specialists see nothing and I’m looking for answers.

Thank you for your posts

[Lillybweggie in reply to Deedrah]

Well, so funny you should ask! I went to see my EENT yesterday. The interesting thing is it became a very disappointing visit. My Mother came with me, as she usually does, just to help me remember information in my dr visit. I have always had a very good relationship with him, up until he could not "fix" me anymore. Having wegeners for 28years has taken a toll on so much of my body, and now my ears just cannot take the tubes, and so now, what else is there?? I asked him very specific questions about what is going on with my ears, because I told him that many wegeners patients seem to have this same problem after many years of treatments and tubes, and he just looked down and had a very sarcastic grin on his face, like I was telling HIM something about my disease... I was confused by his flippant behavior. Like he did not consider what I knew about wegeners was important. I finally got him to tell me that my left ear is perforated, but my right ear is not. I asked him about the white noise, and pain and pressure, etc....He said it was caused from the nerves in the ear being damaged, and this causes all kinds of problems, from roaring noise, to just feeling like cotton is stuffed in my ear. So I asked him what should my next step be, and he just said that many patients cannot get insurance to pay for hearing aids or implants. But I could try and see what my options were with those things. He sent me to Audiology, to have my hearing tested, and compared it to my last one. Keeping up with how my hearing changes is important. But one thing I have tried for my crazy ears, is something my Mom bought for me at a drug store, and it looks like a hearing aid, and it amplifies the noises around you....like the TV, or people talking to you. It seems to help the "white noise and roaring" become less noticeable. It is not expensive, and no Doctor prescription is needed. In fact, MY dr seems to think that it was funny when I showed it to him. I wonder if he would feel different, if he could change bodies with me for 2 weeks, and live with what I do on a daily basis. Maybe he wouldn't think my questions and things I try to do to help me have a more normal life, are so "funny". I'm sorry for the attitude, It was a difficult appointment, and I came home and cried. We also discussed my throat and SOB, and he seemed to think I am trying to self diagnosis myself....I'm ok now, but I feel I deserve some respect after having this disease for 28years. I am so happy you are in remission!! Unfortunately that doesn't help the damage that's already done. But the ear device may be something to try! If you try it, let me know how it works for you.... Blessings, and Love

[Deedrah in reply to Lillybweggie]

Unfortunately, I have had the same disappointing experience with many doctors in the past! Many, many frustrating tears! I appreciate your ear trick. At this point, anything is worth a try! It is driving me nuts!!!

I will let you know if I have any success! Take care and thanks for your reply.

[Deedrah in reply to Deedrah]

One more thing, my rheumatologist mentioned that it might have to do with something called dynamic fluid. When I asked my EENT, he just dismissed it....again, no answers!