CK Update, Hearing Loss, Balance, Steroids

[sunfish]

OK, so Laleh gave us an update, now it's my turn.

If you want to know my full story, go to my profile and read my various posts.  My signature line has my details.  CK treatment in March.  Pretty much recovered by first of May, but then a long, slow slide of side effects since that time

Vision problems starting in May, which months later turned out to be related to the vestibulo-ocular system.  Problems with disequilibrium/floatiness, which started in June/July sporadically, and ultimately settled out as a moderate, daily, 24/7 phenomena.

No real headaches (some twinges in back of head AN side), no facial involvement.

I was initially diagnosed with mild to moderate hearing loss last year.  This was stable after CK in June and September.  I've believed all along that my hearing loss fluctuates.  I've been suspicious that the problem was gradually getting worse.  Yesterday morning, it was noticeably worse.  I called ENT's office, who took the situation seriously, and got me an appointment a couple hours later.  Audiometry shows severe hearing loss in the high frequencies.  The audiologist explained this results in missing the beginning and ending consonants in words, such as  s, t, ch, k, d etc.  This results in impaired speech discrimination.  Both audiologist and doctor said it was a good thing I got in quickly, and ENT prescribed steroids (prednisone taper, starting with 60 mg.)  I think my hearing may actually be an eensy bit better today.  He didn't give me more steroids or for longer, because I have developed hypertension post-CK

So that's my update.  Like Laleh, it's been a real rollercoaster and, at times it's been disappointing as I keep hoping with every little improvement that I'm on the upswing, only to get my hopes dashed.  Also like Laleh, my docs say these symptoms can continue for a couple years, but they are very, very confident most of my problems will resolve (my hearing probably doesn't stand a snowball's chance in hell.  I'm a big fan of the Dot digital hearing aids by ReSound).

[Anomar11]

Sunfish,

It is indeed a rollercoaster, and the waiting can seem challenging at times.  I'm due for my 2 year MRI.  I continue to have minor floating/disequalibrium issues, but less and less as time goes on.  I didn't have any of these issues before diagnosis or until 4 months post CK.  I had 2 bad bouts of vertigo and did a 12 day run of decadron for one of them (4 months after CK).  I also gratefully have no headaches.  Hearing is going south.  Word discrimination especially, but I still have some useable hearing.  I had a 6-7 month time of hemifacial spasms that have resolved.  I still feel radio was the right choice for me despite these bumps in the road.  I think some folks could go either surgery or radio and some feel strongly one side or the other.  I hope your hearing improves and stabalizes and your wonky head improves.  It can be discouraging when symptoms drag on when other people seem to be done with them 6-12 months, but from what I understand it's not out of the realm of "normal" for some issues including balance issues to take up to 2 years plus.   Take care.   

[b91221b]

Hi, y'all...

Had my 1-year MRI  this past week.   The MRI shows blackening in the AN...indicating a reduced blood supply to the little "bugger".  It's size has stayed the same, but the comparison from last January shows "stuff is happening".  For this, I am so grateful...the CK worked it's "magic".

However...this morning...(1 week after MRI), suddenly...(and I mean SUDDENLY...with no warning)...I am experiencing fullness in BOTH ears (only one ear has an AN), migraine headache, tinnitus in both ears, and blurry vision in AN-side eye.  The doctor told me that any eye problems are "not related to the AN", however, I'm not certain I agree with that.  Facial nerve issues have been present for the last several weeks, however, today they are not an issue.
Just wondering if some of the "weird stuff" that happens is common in post-CK patients.  I feel like I want to clear my ears, but can't.   
Thanks....it's amazing how much comfort you all give to me...and each other.  Happy Thanksgiving to all!!

Barbara

[Tumbleweed]

Sunfish, so sorry you're going through these difficult flare-ups. It's still early in the game for you, and you should start feeling a lot better by next Spring. I expect all of your symptoms, except for the hearing loss, should be very mild or gone by then. They may return temporarily at some point after that, but the first year is the worst for most people. Hang in there; you'll feel better soon.

Barbara, the fullness sensation in the ear and the tinnitus (at least on the AN side) are definitely "normal" symptoms that can pop up after having CK. The fullness sensation should resolve over time. There are things you can do to reduce your tinnitus. Try these quick tips:

1. Drink plenty of fluids and avoid alcohol to avoid dehydration
2. Avoid eating a lot of oily, fatty foods
3. Avoid eating sugar like the plague
4. Eating lots of steamed leafy green vegies and salmon have helped me a lot (YMMV)
5. Get plenty of sleep and avoid stress as much as possible

Best wishes,
TW

[b91221b]

Thank you so much Tumbleweed....I'll certainly give some of your "tips" a try!   Please have a blessed Thanksgiving....and also to all the other ANer's on this site.  You are so very much appreciated!


Barbara

[sunfish]

STEAMED LEAFY GREEN VEGETABLES AND SALMON!!!  YUM!!! (As if I could eat another bite right now).  Thanks for all the ANers and the support you've given me this year!