I'm Doing Cyberknife!!

[sunfish]

Just came home from the long-awaited neurosurgeon appointment.  I had already done tons of research, and had concluded I might want to do Cyberknife, if the docs thought it would be a good idea.

I saw Dr. Curtis Worthington in Charleston, SC.  From his online stats and what he said, sounds like he's the Cyberknife guy in my area.  I'm so relieved to have that appointment behind me and the start of a plan  before me.  I should be starting treatments this next month.

I joined ANA this week and received my info packet.  I can't convey my gratitude for all you ANers and this website.  I have no idea how I would have dealt with this problem and made these decisions without being armed with all this info.  Who knows how this will all turn out, but I feel I'm on the right track now!

[leapyrtwins]

Sunfish -

congratulations on making your decision; usually a very hard task.

And thanks also for becoming an ANA member.  

Jan

[sues1953]

Hi Sunfish....I love that by the way!

Congratulations on having a plan thats half the battle!  Good Luck and keep us posted 

Sue in Michigan

[Jim Scott]

Sunfish ~

First, congratulations on reaching a treatment decision as well as selecting a doctor/facility.  These are stress-inducing choices and it's always a relief to have them 'behind you', as it were. 

Congratulations, too, on your ANA membership - and thanks for the kind words about the site and our members.  I agree...you're on the right track, now, and I trust things will turn out just fine for you, as they have for so many other AN radiation patients. 

Jim 

[Vivian B.]

Congratulations on a decision. You must feel relieved. Good luck with your treatment.

Vivian

[ppearl214]

Who knows how this will all turn out, but I feel I'm on the right track now!

... and you went with your gut, after extensive homework   ... Sunfish, congrats on making your decision.  You know we will all be cheering you on. Once you know your treatment dates, please remember to add them to our AN Calendar so we know to cheer you on.

Also, please accept my gratitude for your ANA membership. It's those memberships that help with AN education, peer-to-peer support (ie: this website/discussion forums), etc that helps to keep us going. Please accept my appreciation for your help in supporting the ANA.

Again, congrats!
Phyl

[sgerrard]

Thumbs up. 

Steve

[sunfish]

Update - Today I had a consultation with Dr. Clay, radiation oncologist at Roper Hospital Cancer Center in Charleston, SC about Cyberknife.  I was very impressed with her.  She spent the better part of an hour talking with me, explaining everything, and getting cross-examined by me.  She explained they use the same protocol here as at Stanford, to the letter.  She gave me  a copy of  an article from Dr. Chang, detailing the protocol.  The downside is that they've only treated two ANs with this particular Cyberknife.  When she said that, I visibly winced, but she was patient with my reservations.  The upside is that the neurosurgeon, Dr. Curtis Worthington, was the director of the Gamma Knife center at Univ. South Carolina for 10 years, and they do have plenty of experience treating brain tumors in general with Cyberknife here, including many in sensitive areas.

I like the docs, they seem very knowledgeable about AN issues (protect nerves/cochlea/brainstem), and the Stanford protocol is specifically designed to preserve hearing . . . so I decided to go for it!  I go for my preparation appointment next Tuesday, and will most likely start treatment the week of March 15!  I'm excited and less stressed (at least today)!

[ppearl214]

ah, the "monkey off your back" Well done.... ready to rawk, now?   Congrats on finalizing things..... now, onward, upward, zap the stinker and let's get this over!

Congrats!
Phyl

[sgerrard]

The upside is that the neurosurgeon, Dr. Curtis Worthington, was the director of the Gamma Knife center at Univ. South Carolina for 10 years, and they do have plenty of experience treating brain tumors in general with Cyberknife here, including many in sensitive areas.

That's what you need. With one doctor having 10 years of experience treating ANs with radiation, and another with plenty of experience treating brain tumors with Cyberknife, you are in good shape. The doctors on the Cyberknife forum have repeatedly said that you should look at the total experience, not just the experience on the current machine. CK is a refinement of GK, not something completely different.

Congratulations on joining the CK club.

Steve

[Tumbleweed]

Congratulations, Sunfish! You're past the hardest part: choosing a treatment plan. And for what it's worth, I think you've made a great decision choosing CK. CK has given me back my life.

Now go kill that freeloader in your head and flourish!

Best wishes,
TW

[ChrisSni]

Update - Today I had a consultation with Dr. Clay, radiation oncologist at Roper Hospital Cancer Center in Charleston, SC about Cyberknife.  I was very impressed with her.  She spent the better part of an hour talking with me, explaining everything, and getting cross-examined by me.  She explained they use the same protocol here as at Stanford, to the letter.  She gave me  a copy of  an article from Dr. Chang, detailing the protocol.  The downside is that they've only treated two ANs with this particular Cyberknife.  When she said that, I visibly winced, but she was patient with my reservations.  The upside is that the neurosurgeon, Dr. Curtis Worthington, was the director of the Gamma Knife center at Univ. South Carolina for 10 years, and they do have plenty of experience treating brain tumors in general with Cyberknife here, including many in sensitive areas.

I like the docs, they seem very knowledgeable about AN issues (protect nerves/cochlea/brainstem), and the Stanford protocol is specifically designed to preserve hearing . . . so I decided to go for it!  I go for my preparation appointment next Tuesday, and will most likely start treatment the week of March 15!  I'm excited and less stressed (at least today)!

Hi, i am not a cancer survivor and even a patient but i would like to congratulate you on this. Dr. Clay is a GREAT doctor. My mom recently had cancer and she was her doctor.

I would however suggest you follow all her instructions. Let me explain this though. My mom was put on steroid's by Dr. Clay. They kept her up day's and nite's and very energized. My mom didn't like it because she was so tired at the same time from chemo treatment's. So my mom stopped taking the steroids and it made the swelling worse around the area of her brain. She didn't bother to tell Dr.Clay and this made her abit loopy, incoherent, and dizzy alot of the time.

Good Luck.

Edit: Sorry if this bugs anyone me posting this. I was doing a search on cyberknife and saw this post about Dr Clay.

[sunfish]

Well, it's been very reassuring to hear from various folks who have had these docs.  So I appreciate your post!  I made a decision to have my cyberknife treatments near where I live, performed by folks who are experienced in treating brain tumors using cyberknife, and treating ANs using Gamma Knife, but not necessarily treating ANs with cyberknife.  So my impressions of the doctors played a significant role in my decision - I really liked Dr. Louise Clay and Dr. Curtis Worthington.  Dr. Clay carefully explained how they are using the same protocol as Stanford, and she even gave me a copy.

Good advice about following directions - steroids suck, in my experience, but can be a necessary evil.  I'll keep your advice in mind.  Thanks!

[sunfish]

First cyberknife treatment today. Tried to post a more detailed account, but can get my typing fingers to work (ativan and decadron).  Bottom line: I'm OK, no side effects (except "on drugs") no complications.  I go back Wed. Thursd.  Thanks for your prayers.

[sgerrard]

Plenty of time for details later, Sunfish. Just watch how much you eat while on steroids!

Continued good wishes,

Steve