Testimony to the Cyber-Knife approach

[SKConner]

I have an inter-cranial acoustic neuroma, 9 mm., on the left side of my head.

I finished the fifth and final consecutive cyber-knife treatment today. I can't believe how smoothly it went, and how painless. The cyber-knife is a newly developed delivery system for radiation, that is able to deliver the radiation to a precise point of target, within 1/2mm (tiny) variance. The difference with the Gamma Knife approach, which is also effective and well tried, is that the Cyber-knife is based on the most recent research and technological developments. It also does not use the cobalt based radiation, but another form. The other main difference than the Gamma Knife, is that the Cyber-Knife technology allows the robot to monitor and adjust for any (in my case) head movement. If there is any slight movement at all outside the target zone, the Cyber-knife immediately stops, readjusts before moving on, unlike the Gamma Knife which keeps firing away. The Cyber-knife monitors movement at 10 times per second, is what my understanding is.

The cyber-knife - procedure involves being fitted with a plastic mesh mask that semi-hardens and this is what is used to bolt your head to the table. The Cyber-Knife team consisted of a radiation oncolgist; my ENT surgeon; two physicists, and the tech support team. They took all the MRI's and CT Scans, merged them into a computerized program that allowed them to precisely develop a program of radiation delivery to the precise point of my tumor. I believe mine happened to deliver 211 beams of radiation per treatment to a tumor that is about 1/2 inch in size (inter-cranial tumor between the ear drum and brain).

I have experienced absolutely no side effects...no nausea, no dizziness, no facial numbness, or balance problems.

I would strongly encourage the Cyber-Knife be well explored before being ruled out. It may or may not fit your particular situation, and I do know that the Gamma Knife procedure remains also a tried, true and accurate system.

Now, I start coming down off the steroids in the next week, and will return in a few months to do follow up  MRI's, etc..to monitor results.

Thanks to all, and I will be glad to share any experience I can that would be of help to you.

-Peace,
   Steve

[tatianne]

thanks for sharing your experience Steve, its very valuable to me.
Im new hear, mine IAC and is 8mm and im leaning towards GK as per my doctors advice,
we dont have CK here in Monreal Canada as of yet (at least i dont think).
Glad to hear everything has gone so well for you,
please keep us updated.
T

[Mark]

Steve,

What a wonderful post, congrats on having such a positive CK treatment experience.  . My best wishes for a successful outcome in terms of killing that nasty AN 

Your description of the CK process was absolutely perfect and caused me to reflect on 5 years ago when I was one of the few radiosurgery AN'ers and certainly the only CK one on the board. Things have come along way relative to the increased number of posters who can help explain radiosurgery and surgery options to the newly diagnosed so well. It used to be a battle to help people see through the myths and misconceptions of both options. I used to feel like somewhat of a lone ranger correcting some of the "bad" information others would post. Now there are so many regular posters who can accurately articulate the pros and cons of both options I rarely see where a new person looking for answers gets steered in a wrong direction. Certainly, on the CK / GK side of the discussion there is Phyl, Jamie, Shoegirl , Okiesandy  and now you who all do a fabulous job responding to various questions.

I'm drifting off subject but I've been struggling with a lot of work / personal time constraints which have made maintaining the same level of activity on this forum difficult, and your post I think finally made me realize that the quality of folks and the information on this board today is so much better that I don't really need to anymore. So, while I will promise to pop in and say "hi" once and awhile, I wanted to let folks know I'm dropping off into " ANA forum retirement" in order to balance out some time pressures. If anyone does want my help they can certainly send me a personal message and I'll be happy to respond.

Thanks to all of you who stay active in this AN community and your commitment to support others on this path we all have been on. Good luck to each of you on your journey 

Mark

[marystro]

Mark,

Good luck in your well earned "retirement".  I, among others I am sure, am gratefully in-debt to you for your candid and articulate advice.  Without your timely response and compassionate support, I would have never found CK and the treatment team that I hold the highest esteem!

It has been almost 1 month from my Cyberknife treatment.  It was such a wonderful simple procedure that I didn't even feel like I had a medical treatment.  I could have said nothing but the wonderful results so far.  My only side effect is little louder tinnitus which usually subside according to the doctors.  I have not had any more facial sharp shooting pain and only slight tingling on the face at times.

I told my TV anchor-lady good friend about my experience and she is planning to do a segment in our local TV station.  The words need to get out since this medical technology wonder is not just for AN but other ailments as well.  I feel responsible in letting others know as I have benefited so much from it.

I hope new comers to this board would read some of the posts regarding CK.  New technology adoption is sometimes a challenge to many even the professionals.  Who knows, may be some day, we will have gene therapy or other means that will rid of our "little" challenges...

We will carry your banner in your "golden retirement years" and march on.  Please stay in touch when you can.  We'd love to hear from you sometimes.

Warmest wishes,
Mary

[BevM]

Hi Mark:  I also want to thank you for your posts regarding CK.  When I started the treatment exploration your journey from Kaiser to Stanford was encouraging now, three months later, I will have my Stanford consult on 9/19.  I requested the referral to Stanford from  Dr. Nutik at Kaiser.  Kaiser does contract with Stanford for CK treatment now.

Best wishes to you and thanks for your help!

Bev

[FranDS]

Steve, your remarks are very encouraging.  Altho' I'm waiting and watching, when I have to take the next step, I have decided on CK too.  I've been researching this and other treatments since May, and I'm confident that CK is the way to gofor me.  Thanks!

[ppearl214]

Steve,

You are a mirror image to me... at time of treatment, 1cm, left IAC, 5 day/dose CK. How many Gy total did they do over the 5 days?  As you know, it's painless and the anxiety is worse than anything else.   Great post you did and thanks for sharing it all.

Mark... my mentor in CK crime... what the heck do I say that I haven't shared with you already in print or phone?  See post in other thread here. I want to think about what I will write... it's VERY hard for me to see you go from here.

Phyl