In Need of Positive CK feedback

[JLR]

I am having CK starting this Wednesday, Thursday and Friday.  This site as well as the CyberKnife Forum has been amazing and supportive. However, I would love to hear from those that had a positive experience with the CK. I am pleased that I have the option of having the CK.  There are so many of you that have had awful side effects of CK.  Unfortunately, I am dreading the side effects that I have read about.. Please if anyone has had minimal side effects and able to move forward please respond.  Again thanks so much, Joan 
JLR

[sunfish]

Well, I may be one of those who have reported some relatively "awful" CK side effects.  But let's just focus on the positive for a minute here.

First of all, I would not change my decision to have CK.  I can't state for sure that I'm any worse off now than when I was diagnosed with the AN last January, before CK.

1.  The procedure itself is not bad at all, for most people. 
2.  I did recover rather quickly in the short run, for the most part.
3.  I have never had significant, AN related headaches.  I hate headaches, so this is a big positive factor for me.
4.  Although I suffer balance/disequilibrium issues, it has not affected my employment at all.  I have changed some of my leisure activities a bit, and that is the only way this has changed my lifestyle.  Docs say this is temporary.
5.  I have retained much of  the same hearing I had before CK, although it fluctuates.  I had significant hearing problems before CK.
6.  No facial problems.  None

I firmly believe I've had fewer "issues" post-CK than I might have had if I had chosen traditional surgery.  Hope this helps.

[Tumbleweed]

I had a rough ride in the first six months following my CK treatments, but it was all worth it.

My balance is subjectively now 75% better than it was before treatment.
My tinnitus levels are subjectively about 75% lower than they were before treatment.
My energy level has improved since treatment.
My hearing is worse in the midrange frequencies since getting treated, but surgical resection would've left me immediately deaf on the AN side, so I'm doing way better in that regard for having chosen CK. And I'm pretty certain my hearing would be at least as bad as it is now had I continued with W&W.
Although my AN swelled 33% in volume during the first 5 months after getting CK, it subsequently shrank about 64% in volume and is now smaller than when it was treated (and also smaller than when it was first diagnosed).

Your results will not be exactly the same and will, in fact, probably differ considerably. But my outcome was very positive. I'm a big believer in CK.

Best wishes,
TW

[JLR]

Thank you TW and Sunfish! I do feel better. You guys are the best. I know that the CK is a painless procedure BUT are there any annoyances during the procedure.. Thanks again.

[6pick]

Thank you TW and Sunfish! I do feel better. You guys are the best. I know that the CK is a painless procedure BUT are there any annoyances during the procedure.. Thanks again.

Well hi, Joan,

My "ride" has been much more like sunfish's, although I'm still in the "short run" having gone through CK about 6 weeks ago.

To respond to your question about "annoyances during the procedure" you might check my post "My turn to nuke the alien . . ." (http://anausa.org/forum/index.php?topic=13510.0). I attempted to journalize my daily experience to answer exactly this question. I sincerely hope you find it helpful.

Mark

[Tumbleweed]

I know that the CK is a painless procedure BUT are there any annoyances during the procedure..

Joan, I think it would probably be helpful for you to read my post here:
http://anausa.org/forum/index.php?topic=6910.0
It tells of my experience with CK treatments two-and-a-half years ago and makes recommendations for those about to undergo treatment.

Embrace your treatments. It is a very positive thing. 

Best wishes,
TW

[JLR]

CK Day 1 DONE! So far so good. two to go.   Thanks for all the support.

[sunfish]

Here's hoping the next two days go smoothly for you!  I just found out yesterday my tumor is croaking.  Apparently, they succeeded in inflicting fatal damage with CK.  I'm certain you'll be equally successful.  There will definitely be some bumps in the road, but maybe they'll be small!

[JLR]

Thanks Sunfish! and Im so glad your making fabulous progress. I hope my results are as good. Two more days to go! The procedure itself took about 40 min. the first 30 were ok BUT the last 10..well having my head resting in that plastic cradle, and of course with the mask, it started to really ache me. But that was about the only little discomfort I had.  The CK staff at Winthrop are all very nice and very professional and very supportive.  Again, I thank the forum  for all the support, and all the answers to my many questions.  What's interesting is there are so many what ifs that go on prior to the actual CK and then....it all becomes quite clear that it is the best decision I made and there were no more what ifs..I just went and did it. Joan

[Tumbleweed]

Hi, Joan:

I'm very happy to hear you are embracing your inner suntan. 

If you read this before your last treatment, maybe try taking a calcium/magnesium supplement an hour before treatment (with food so it doesn't upset your stomach). It will relax the muscles in your body (head, neck, face, etc.) and should make you more comfortable throughout your treatment.

Best wishes,
TW

[TJ]

JLR

Although I am only one month from the end of CK is it has been fairly easy (knock on wood)  So far I have only experienced a small loss of hearing not too bad yet.  I wear hearing aids so they were able to adjust them.   Also I have increased tinnitus.  I am handling both fairly well.  The doctor has me on a steroid for the tinnitus, but so far I don't notice any change.

Best of Luck

TJ