Author Topic: CK after surgery ~9 years ago  (Read 804 times)

zinger1905

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CK after surgery ~9 years ago
« on: November 20, 2017, 11:34:39 am »
Hi! I was last a frequent visitor to this site in 2008/2009 when I found out that I had a ~1.5 cm AN on my left side at the age of 26. I opted for retrosigmoid surgery at Johns Hopkins in February 2009, and things were fine for awhile. In 2015, I developed hemifacial spasms on the AN side, which led me to get a second opinion about my situation. My doctors at Hopkins believed that the enhancement on my MRIs was scar tissue, but the folks at the University of Colorado, where I live now, felt that it was regrowth. After watching it for another year, the recurrent tumor made evident growth and is now poking out of the IAC. I consulted with Dr. Chang at Stanford and decided to move forward with CK treatment, which I will have next week.

I haven't done a lot of research about side effects and what to expect after CK because I already went through surgery and know that this should be much easier. I've already lost the vestibular nerve and hearing on the AN side, so I shouldn't have issues with that. Dr. Chang said it's possible that I will develop facial spams again from the CK but that they should subside as the tumor dies. So that leaves the potential issues of tiredness and headaches. Are those pretty universal issues after CK? How long do they last, and do they start immediately? Also, do you automatically receive steroids when you get CK treatment at Stanford? Is it Decadron or something lighter? The Decadron after my surgery was pretty nasty.

Thanks!
Retrosigmoid surgery Feb. 9, 2009 at Johns Hopkins with Drs. Tamargo and Carey.
http://adventureswithmanny.blogspot.com

salomon

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Re: CK after surgery ~9 years ago
« Reply #1 on: December 27, 2017, 08:32:29 am »
l hate that no one has addressed this thread since Nov 20!

l think every patient that has CK/GK has slightly different results Zinger.l had some very slight headaches and was tired,but overall did well.But was well prepared before a shot of radiation.Diet and exercise (in my belief) to a certain extent had to do with my recovery.l had a headache right after surgery but went away within a day or two.Had a few since,but attribute that to work and stress.Six months later l do have some days l get tired.l usually come home from work and take a nap when l feel like l need one.And l didn't receive any meds afterwards.Check my thread out

l hope this will help even though lt has been a month since you asked these questions!

Maybe a few others will chime in...

Jet747

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Re: CK after surgery ~9 years ago
« Reply #2 on: December 27, 2017, 09:18:19 pm »
Hello Zinger,

Sorry to hear you are having to revisit this AN issue so many years after RS surgery.

I trust the CK went well for you...I had preplanned GK 6 mo. following my RS surgery so unfortunately I can’t offer too much applicable advice/wisdom.

Hope you have a great 2018!

BR,
Jet
RS Surgery May 2015

GK Radiation October 2015

https://www.anausa.org/smf/index.php?topic=21969.0

zinger1905

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Re: CK after surgery ~9 years ago
« Reply #3 on: December 28, 2017, 09:49:45 pm »
Thanks for the responses :) The CK went fine, I ended up with one session lasting 26 minutes. The radiation oncologist said I could skip the steroid, and I didn't have any major issues that day or after. Now it's been about a month, and I don't feel any different than I did before radiation. Hopefully it stays that way!
Retrosigmoid surgery Feb. 9, 2009 at Johns Hopkins with Drs. Tamargo and Carey.
http://adventureswithmanny.blogspot.com

 


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