ANA Discussion Forum

Post-Treatment => Post-Treatment => Topic started by: Anomar11 on December 16, 2009, 06:57:14 pm

Title: One year post CK
Post by: Anomar11 on December 16, 2009, 06:57:14 pm

Hi Everyone,

One year out and it looks like the booger is swollen a bit, but showing necrosis.  I've had a few bumps in the road, but am actually feeling better.   Essentially no symptoms until four months.  Four months out, I had a fairly bad bout of vertigo.  Went on a 12 day taper of decadron 12mg-8-4 at 4 days each.  It was rough, but I was determined to ride it out as I wasn't anxious to sign up for that again too soon.  It was better than the vertigo though.  I had another bout the end of July, not as bad and managed it with 2 mg Valium 3 x day.  At six months out, I started having hemifacial spasms.  Started with eye twitching, then whole side of mouth pulled up.  Lasted about 15 seconds didn't hurt and had them about 1-5 times daily.  Haven't had one now for about a month. :).  Dr. Chang did suspect they would diminish.  Since first round of vertigo I've had increased wonky head, but have learned to manage, and think it's getting better.  I do find walking, especially outside helps tremendously.  Overall I've gotten on with life pretty well.  This board has been a great help.  Especially reading histories of radio predecessor's has helped me know what's in the realm of what can happen.  The one thing I didn't find much when searching was info re: facial spasms.  So If I can help anyone reading this in the future, please don't hesitate to contacts me.   My hearing has diminished don't know exactly how much and I may not have a hearing test until 18 months.  I did have one at 6 months and it was down.  I still perceive it about the same though, and can hear loud phone turned up and earphones.  I remain glad I had CK.  I continue to hold the faith.  This option is indeed a test of mental perseverance as you wait it out, but I just keep thinking about 95% success rate.  Take care.  Mona

Title: Re: One year post CK
Post by: loose screws (tightened) on December 17, 2009, 11:59:48 am

I'm a post surgery patient. While I was "on the fence" deciding between radiation or surgery, Stanford and Dr. Chang would have been my choice had I gone that route. It sounds as if the bumps in the road come a little later post CK as compared to surgery. It also sounds as if vertigo and the facial spasms may be a couple of the worst lingering effects of your CK, but it does sound manageable as you describe. Hopefully things will get better with time. If your Dr. says thing will get better with time, they probably will. They've seen it all.

Good luck with your recovery.
Mike

Title: Re: One year post CK
Post by: Jim Scott on December 17, 2009, 05:28:22 pm

Mona ~

Thank you so much for that very positive and encouraging update!  I'm delighted to learn that your hearing remains serviceable and that your hemifacial spasms have apparently ceased.  I love to read about AN post-treatment patients conquering the 'bumps in the (recovery) road' and getting on with their life, as you are.  Good job!  :)

Jim

Title: Re: One year post CK
Post by: leapyrtwins on December 17, 2009, 07:43:58 pm

Mona -

congratulations on the one year anniversary and thanks for the update.

Jan

Title: Re: One year post CK
Post by: Anomar11 on December 18, 2009, 08:08:55 pm

Mike

Thanks.  Sounds like you're fairly fresh post surgery.  Had I gone that route I would have given serious consideration to House as well. I hope your recovery is coming along.

Jim and Jan

You were two of several that helped me alot 18 months ago when I was first diagnosed.  I admire you both for the great service you do for fellow ANers.   Thank you.

Mona