20 month post-CK update

[sunfish]

Hi everybody!  I took a big break from the forum(s) for awhile, not sure why, but now I'm back.  Thought I'd give you an update regarding my progress.  It's been 20 months since CK, and my latest MRI was in September.  I don't have to go back for another MRI for a year.

My September +/- 18 month post-CK MRI shows a very toasted AN (totally black)!  I'm very, very happy about that result, of course.   Here's an update on my symptoms:

--Essentially no change in hearing from pre-CK levels.  I still have some pretty significant hearing loss on the AN side, but at least it's not any worse than before AN diagnosis.  Big success as far as hearing preservation goes.
--Disequilibrium or wonky head or imbalance gradually improved, starting from about 1 year post-CK mark.  I still stumble a few times every day, and have some problems with stability.  If I bend over to pick up laundry, my brain doesn't tell my body when to stop bending!  I don't actually fall, however.
--Some problems with vision changes, which specialists weren't able to nail down.  I quit worrying about this, and my brain has pretty much adapted.
--Worst problem: blood pressure skyrocketed a couple days after treatment, and I've been on stronger and stronger bp meds ever since.  Neurosurgeon firmly denies that this could be a radiation side effect, but my primary care physician and my own research indicates this is a definite possibility.  Primary care doc says I have a rather unusual, atypical sort of hypertension. It will take many more months/years to sort this out.

I've been unlucky and had multiple, totally unrelated health problems over the past years.  Between those issues and the AN issues, this has been a long year of revolving door doctor visits and tests.

Best news:  Primary care doctor agreed this morning that I can wait 3 months for next followup visit.  I'm also only on one pill per day now, instead of six!  Looking forward to a more active, healthy year.

Looking back, I'm sure I would still have CK if I had it to do all over again, and probably at the same facility.

[ppearl214]

From this 66 monther  , MAJOR congrats and continued wellness wishes! Hang in there!!!!!!!!!!!!!!!!!!!

Phyl

[Jim Scott]

Sunfish ~

Thanks for the interesting and informative update.  I'm pleased to learn that even if everything isn't 'perfect', you're enjoying life and doing quite well.  Congratulations!

Jim

[JLR]

Hi Sunfish, Great news!! This is going to be a fabulous year for you. All the best wishes for continued good health, Joan

[Tumbleweed]

Hi, Sunfish:

What a fantastic report! Widespread necrosis, no further hearing loss, balance improving and no facial issues; congratulations on an incredibly positive outcome!

Best wishes,
TW