New to Forum, need info/help regarding hearing loss

[wolowrey]

I am so glad to find this forum. My wife is ill. Tomorrow we meet again with the Rheumatologist, expecting to get a WG diagnosis. She has extreme fatigue, lost hearing in right ear 2 months ago and now has extensive hearing loss in left ear. Diagnosed with asthma recently but now have doubts of that. Diagnosed with unusual bacterial infection (identified with culture) in sinuses and completing 2 weeks of treatment. Had attacks in joints, ankles, wrists, hands with swelling, inflammation, pain. Fever comes and goes. Protein and blood found in urine. Liver enzymes elevated. Weight loss. Night sweats. If this is WG we are eager to know and begin a treatment plan. May have to wait a little longer if Rheumy decides to complete tissue biopsy first.

Big question: can there be a reversal in part or whole of the hearing loss? If so, how and how much?

thanks for any input and info from your experiences
Bill

[Hal]

Hello. Whilst having a Wegs diagnosis will be life-altering, in a way, it will be good to confirm if it is or is-not the case. That way you wife can get started on a treatment plan.


As for the hearing loss, has she seen an Ear-Nose-Throat (ENT) specialist?

In my specific case, I had many of the symptoms you described. At first I was having trouble breathing, and had sinus surgery to remove polyps that had grown, caused we later assumed by the inflammation. The inflammation also messed up my hearing because the drainage was blocked. Other symptoms were the roving joint pain (instant arthritis so to speak), night sweats, red eyes, sporadic vision loss, nerve damage, swelling and so on.
It was only months after the sinus surgery that my Wegs was diagnosed.


Between the polyps removal, drains in both ear drums, and eventually the drugs starting to knock down the inflammation, my hearing returned. So to answer your question, yes everything may indeed return to normal. It may take a little time. As you might have read browsing other folks stories, Wegs affects everyone differently. Hopefully other folks will share their hearing-experiences too.


Good luck! Let us know how things go!

[annekat]

Welcome to the forum, Bill, and best to your wife. I have to say, from my unprofessional viewpoint, that it sounds a lot like Wegs. I had a lot of the same issues, and when the night sweats appeared, that was a sign that things were coming to a head. I hope you are able to get a positive dx ASAP if it's indeed Wegs.

The weird bacterial sinus infection wouldn't be Wegs, but the inflammation in the sinuses could set up the right environment for that to take hold, I'd think.

As for the hearing, I lost a lot of mine and have hearing aids, and I have no real expectation that it will improve. However, as Hal says, everyone is different, and it is great to hear that he got his back, as have others on the forum. Possibly since it was only 2 months ago that your wife lost hers, there is more hope, but I guess it would depend on the exact causes and the type of damage involved.

Good luck, and keep us posted! You have found the best place to be for any Wegs patient or their loved ones.

[drz]

My hearing in right ear never returned or got better but a BAHA really helped restore adequate hearing for most things. My hearing in let ear varies according to how open my Eustachian tube is so this varies a lot but generally got much better as I got into a a drug induced remission from Wegs. Some people get their hearing back but others don't. Prompt treatment for Wegs and steroids seems helpful in relieving Weg symptoms but often it cannot completely restore the damage done to the body. Good luck. Those of us with hearing loss all know how frustrating it is to not hear.

[Pete]

Hello Bill,

At onset of disease, I experienced a persistent ear infection in my right ear. After having the eardrum lanced (twice) and a drainage tube in place for about six months, my hearing, like drz's comes and goes depending on whether the eustacian tube is open.

I also suffered some prior hearing loss due to exposure to loud noise in the military and while learning to fly. My unaided hearing is solely within the midrange of the spectrum. Hearing aids give me the bass and treble. With aids, I hear adequately, but struggle to follow a conversation in a noisy restaurant.

[wolowrey]

Thank you for these responses. It helps just to know that some people do experience some restoration of hearing. I guess that is a way for some hope to emerge or to hold on to while beginning to adjust to our rapidly changing reality.

i am so thankful for all of you who have created and have made this forum work. I used a similar forum for eight years when my first wife got Early Onset Alzheimer's Disease. Our AZ forum was great support. After my first wife died, I was able to remarry with one of our closest family friends. She had always been single and her worst nightmare was that someday I might need to be a caregiver again. Now that may be happening in the third year of our marriage. But, as I have always told her, it is better for us to be in this together, and besides, I am a well trained and experienced caregiver. So if this is our journey...we will do it together. What an encouragement to discover that even with a rare disease like WG, all of you have already created this community so we walk with others who share the pain, the wisdom, the experiences and the encouragement. You have certainly encouraged me already.

we'll let you know as our process unfolds.
with gratitude,
bill

[drz]

Hello Bill,

At onset of disease, I experienced a persistent ear infection in my right ear. After having the eardrum lanced (twice) and a drainage tube in place for about six months, my hearing, like drz's comes and goes depending on whether the eustacian tube is open.

I also suffered some prior hearing loss due to exposure to loud noise in the military and while learning to fly. My unaided hearing is solely within the midrange of the spectrum. Hearing aids give me the bass and treble. With aids, I hear adequately, but struggle to follow a conversation in a noisy restaurant.

I think everyone with hearing aids struggles in any noisy environment. Wind noise when outside in a windy place also really impairs ability to hear normal conversation.

[annekat]

I think everyone with hearing aids struggles in any noisy environment. Wind noise when outside in a windy place also really impairs ability to hear normal conversation. This is true, though there are some adjustments on the aids for background noise and such, and the brain does some of its own adjusting, so I'm having an easier time of it than when I first got the aids. I'm thankful to have them, though I still have to ask people to repeat themselves a fair amount. Some people mumble or talk too quiet or too fast.... it's just a part of life.

[wolowrey]

We have new developments in our path toward diagnosis and treatment.

Our Rheumatologist has now diagnosed Alice with Vasculitis , probably Wegener's. the next step is to get a kidney biopsy. We see the Nephrologist tomorrow. The 24 hour urine collection revealed 1.6 grams of protein in the urine, thus indicating significant involvement of the kidneys. The Rheumy started her on 60 mg of prednisone daily until the final data can confirm a diagnosis. It is expected that some type of chemotherapy will begin next. The immediate effect of the prednisone after a few days is increased energy and improved hearing. The ENT has done another culture to see if the nasty bacterial infection in the sinuses has improved. Tubes in the ears are a viable option for later. The Bactrim treatment for the bacteria will continue another month to reduce the possibility of a bacterial infection relapse when the chemo begins to greatly suppress the immune system.

We have discussed with our Rheumy a later referral to Johns Hopkins Vasculitis Center in Baltimore. She is strongly supportive of that and after we have the results of the kidney biopsy, this will be pursued. That would bring into our treatment plan a high level of specialists expertise in WG guidance for our Rheumy. She also has experience with WG, which is very encouraging.

We'll keep you informed as we go.
Bill

[Alysia]

Hi Bill,
welcome to the forum. this is the right place for you and for your wife, on her way to recovery. It looks like she is on that direction, and that she is in good hands, both yours and her docs.

[drz]

Great plan and it is encouraging that the increased pred helped with her hearing.

[annekat]

Great plan and it is encouraging that the increased pred helped with her hearing. I was thinking the same thing, and that this could be a sign that the hearing might return to normal some day. It seems like Alice is being diagnosed early enough in the game that she might avoid some of the problems that some of us have had who had a late diagnosis, say, after having "smoldering" Wegs for a couple of years or more.

BTW, one of our long time and most active and knowledgeable members goes to Dr. Seo at Johns Hopkins in Baltimore and thinks very highly of him and the department there in general. The member's name is Sangye, that is her user name, and she has not been active lately, though she is doing OK... but if you search the archives you will find many posts from her about all aspects of Wegs as well as her experience with Dr. Seo and Johns Hopkins.