Author Topic: 6 month follow up post CK  (Read 3497 times)

jvastola

  • New Member
  • *
  • Posts: 41
6 month follow up post CK
« on: May 24, 2007, 02:30:58 pm »
I almost didn't post because I try to post the positive stuff, but my AN is fighting back.  Lots of headaches, numbness, tingling, dizzyness, hearing degrading, etc.  Today I found out why.  In 6 months post CK, it has swollen 3mm in one direction and 2mm in another. With no signs of cell death.  >:(

The way I figure it, the bigger they are the harder they fall right??  I look forward to my next MRI in another 6 months. I expect plenty of dead little bad guys!  I had been on Tylenol and Ibuprohen all the time and now I am on a double dose of Alieve full time.  My Doc is trying to keep me off the prescriptions as long a possible.

I did get a hearing aid about two months ago and it is helping a lot.  It has provided relief form the tinitus and helps my speach recognition.  So all and all it's not bad news just not any more good news.

Jim
Jim
San Jose, CA
Diagnosed 10/4/06
2.2cm x 2.4cm x1.9cm Left side
CK December 4-6 2006
6 month MRI showed no cell death
12month MRI Tumor size 1.9x1.9x1.6
14 months my hearing stars to return!!

macintosh

  • Full Member
  • ***
  • Posts: 117
Re: 6 month follow up post CK
« Reply #1 on: May 24, 2007, 03:01:02 pm »
Hi Jim--

Sorry to hear you're feeling badly. The long term news might not be that bad, though. Here's an abstract from Neurosurgery: February 2006. The primary author is BE Pollock:

<Tumor expansion after VS radiosurgery rarely denotes a failed procedure, and the majority of patients only require further imaging. Approximately one third of tumors that enlarge will remain increased in size compared with the time of radiosurgery but will not show sequential growth. Additional tumor treatment should be reserved only for patients who demonstrate progressive tumor enlargement on serial imaging (2% in this series). >

So according to this, your odds are still very high that this thing will die off on its own.

Mac

pearchica

  • Sr. Member
  • ****
  • Posts: 320
  • Hey!
    • Political Chic Chat- an Independent Political Cocktail for Women
Re: 6 month follow up post CK
« Reply #2 on: May 29, 2007, 07:09:28 pm »
Oh Buddy: I'm sorry to hear about the post swelling. :'(

I was told to that this very well could happen to me- I do know that others on the website experience swelling, then cell death. And Macintosh, thanks for posting the info- I had read something similair on pubmed.org ( if not the same thing...)

I'm glad you are trying to stay with over the counter, I am still on congestion medication ( this is what started me on my AN path- continual congestion but no allergies...) I do notice that my ear hurts on the days I forget to take the medication.. Also driving/stress can cause my ear to throb.

I'm glad you posted your conditions- it will help others as well Jim- take care of yourself. And again, I'm sorry that the damn thing swelled up.  >:(  Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

marystro

  • Sr. Member
  • ****
  • Posts: 327
Re: 6 month follow up post CK
« Reply #3 on: May 29, 2007, 08:06:55 pm »
Oh yeah!  The swelling  >:( >:( >:(...

Hang in there Jim!  We will all get through this...

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

jvastola

  • New Member
  • *
  • Posts: 41
Re: 6 month follow up post CK
« Reply #4 on: May 29, 2007, 10:08:03 pm »
Thanks folks!

I totally agree that stress plays a part in this.  I was on a particularly stressful job site about 10days ago.  I was popping three tylenol and three ibuprophen about every two hours just to think straight.  Before all of this I took about two tylenol a year!!

Thanks again
Jim
Jim
San Jose, CA
Diagnosed 10/4/06
2.2cm x 2.4cm x1.9cm Left side
CK December 4-6 2006
6 month MRI showed no cell death
12month MRI Tumor size 1.9x1.9x1.6
14 months my hearing stars to return!!

ppearl214

  • Administrator
  • Hero Member
  • *****
  • Posts: 7451
  • ANA Forum Policewoman - PBW Cursed Cruise Director
Re: 6 month follow up post CK
« Reply #5 on: June 02, 2007, 06:23:46 am »
Jim

You know I've been following your situation here and on the CK Support Forum.  Please keep in mind that MRI machines have a margin of error of +/-2mm, so based on the measurements you share, it sounds like it may still be within measurements of what it was at the time of treatment..... the tumor does tend to swell abit before it begins the dying process... so the swelling (edema) may be occuring... sounds about right for the timeframe....

I'm sorry to hear you are having issues.  I know the first 6 mos post treatment for me, I ran into many things you have noted.... I was also on daily ibuprofen and Aleve.  Once past my 6 mos, things lessened and were much tolerable. My hope is that this will also occur with you.  Know that I continue to watch your situation and send wellness wishes to you.

Hang in there......

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"