new member - BC, Canada

[howattzer]

Hi there,

Glad I found the forum. My mom is 71, recently diagnosed with WD after 6 months of review. Treatment seems to be working well, for now, but her middle ear function has not returned after 10 weeks of Pred treatment. Is there an expectation that her ear function will return to normal?

Local doctors seem to know very, very little and are almost guessing at what to do. I seem to have found more information online than the doctors know.


Thanks in advance.

Concerned son in Kamloops BC Canada.

[annekat]

Welcome to the forum, and I'm glad your mom's treatment is mostly going well. It's hard to answer about the ears. Many of have had our ears and hearing affected to varying degrees of severity. Some have gotten our hearing back with time and others haven't. Is it hearing loss you are concerned about, or other middle ear functions such as drainage or balance? For many of us, it is Eustachian tube dysfunction caused by inflammation, preventing proper drainage from the middle ear and preventing the balance of air pressure on both sides of the eardrum. There are related disorders which may vary from this scenario. Best of luck to your mom for continuing recovery.

[howattzer]

Thank you for the reply, and the well wishes. There does not appear to be any issues with balance at this time. Definitely drainage issues caused by inflammation. Doctors do not seem to have any urgency addressing the drainage issues and I do fear that without attention, long term damage to the middle ear may occur.

[Dirty Don]

Welcome howattzer, good of you to support your mom on here. If she's up to it, she might get on line too...it helps to 'chat' with people who have the same thing, thus experiential advice. We are of all ages on here, including the young...sighs. I have damaged sinuses, beyond any repair, a mucous producing machine, if you will! Also have an enlarged E tube which, after time and drugs, has diminished some, but still aggravates me. The echoes interfere with hearing, for better or worse...yikes! Did I say that? Anyway, best to you, sounds like things are moving forward for your mom. You may try to have them consult docs at some of the 'AI' clinic specialists such as Mayo, Cleveland Clinic, Hopkins, etc.

[annekat]

Thank you for the reply, and the well wishes. There does not appear to be any issues with balance at this time. Definitely drainage issues caused by inflammation. Doctors do not seem to have any urgency addressing the drainage issues and I do fear that without attention, long term damage to the middle ear may occur.You did not mention hearing loss, so I'm guessing it is mainly the drainage and pressure that you are concerned about. Since she is getting timely treatment, she may avoid hearing loss. If the fluid in the middle ears is still thin, she may benefit by getting tubes installed in the eardrums, which would provide a method of drainage. If it is too thick, that might not work. Possibly as her treatment progresses, the e-tubes will open back up and the ears will drain again. Don's condition of perpetually open e-tubes is more uncommon, but one of the many variations of WG. His condition of severely damaged sinuses is not so uncommon, and I hope your mom's timely treatment will help her avoid that.

[marta]

Hi howattzer,

I just replied to your post on the other thread, but I'm popping it here as well just in case: InformationCanVasc (http://www.canvasc.ca/InformationCanVasc.htm)

I'm sorry for the diagnosis but it's better than no diagnosis. Now you just truck on forward. The advice on this forum is fantastic, and you should take it to heart. I know a couple who just had to move out of BC because of the medical care they were getting, but that was up in PG. You're only five hours from Van so some of these docs might be of help or they can direct you to someone closer to you.

All the very best with everything.

[pberggren1]

I wonder why medical care is so bad in BC. Does anyone know what is bad about it?

[Alysia]

Hi and welcome.
I am sorry for your mom. I hope she will soon feel better.
how much pred is she taking ? what are her other meds ?
at my first year with WG I had fluids in my ears and deterioration in my hearing. the docs didn't know what to do. (bad ENT here too :frown: ) so, on my own, out of helplessness, I tried different dozes of pred untill I found out which doze of pred and for how long, was cleanning the fluids.
when she will get the correct treatment, her ear will become better.
good luck in finding good docs and please update us.