Lots of CYBERKNIFE questions...Help?!

Hello all! So, after what doctors described as a small amount of “seepage” back in November which led to a horrific headache and the diagnosis of a large, inoperable AVM deep in my brain near that thalamus, I am finally scheduled for cyberknife treatment this coming Wednesday morning at Boston Medical Center. They have been great so far and have helped me navigate five months of frustration, multiple delays and horrible communication with various doctors and hospitals in the area.


http://www.bmc.org/cyber-knife/patientinformation/treatmentprocess.htm

For those of you who know or have personally gone through the cyberknife treatment, can you share your stories with me? How did you feel during and after treatment? Many people have mentioned I may experience some considerable fatigue afterwards...did you? I am hoping to travel home to be with my parents out in Kansas a few days afterwards. Is this a smart decision? Did you experience any brain swelling afterwards? If so, how long after? Did your complications get reduced or did you find that they continued for awhile?

Once again, any information you can share would be greatly appreciated! I'm at peace with everything and find myself anxious to get this started (since its been five months since I was first diagnosed) but I'm also still trying to find answers to these questions.

Thanks everyone!!

Keith
463-cyberknife.jpg (158 KB) 464-cyberknifemask.jpg (124 KB)

Mate, a bit of advice from my AVM removal, get a nurse to put any needles in, get a nurse to stop any external bleeding.
If your feeling anymore than simply sore, ie worse than taking a plaster off. They person doing the work is not fully trained and shouldn’t be doing what there doing, simply ask for them to get someone else to do the work.

I’ve had 2 angiograms, the first was agony, the second was no worse than taking a plaster off, why ?
I now know that not all medical staff have equal ability

Thanks Alan for the reply. I’ve had to watch out for nurses and how they insert IV’s so far…not fun at all!

KEITH
I NEVER HAD CYBERKNIFE PUT I SEEN THIS VIDEO WHILE LOOKING FOR OTHERS
http://www.youtube.com/watch?v=RUK20ZlWG7A&feature=related
THOUGHT THIS MAY HELP CYA GORDON

Thanks Gordon for the video link. I looked it over and it was informative. Anyone else with stories or recommendations/suggestions?

Cyberknife is a modern version of the gamma knife I had done back in 1989. Then, they used a Sears battery operated drill with a 1/4 inch drill bit to put four holes in my skull. Then, a large metal disk was bolted to my head. Next, two half metal ball cages were bolted on to the metal disk. The metal cages made a giant ball with lots of tiny holes. I was wheeled into a big reactor type thing that shot the gamma knife stuff into my head. This was done by the people who were inventing the thing.

It worked OK. Good to get it over

Keith:
I had the gamma knife treatment in July and so far with not adverse problems. Had a little brain swelling, but was given steroids which kept it to a minimum.

The worse part of the entire procedure was the doctor giving the shots in my head at the points where they screw the halo into the skull. Like someone said; “Try and get a nurse to give the shots.” It felt like the doctor was digging for something with the needle.

Good luck

Dewdo from the other Washington

HI,
I had stereotactic radiation in Sept of 09. I did not have cyberknife but another similar type I think called Lineac.
They drugged me up pretty good so the shots and halo weren’t too terrible. I did however get a sick feeling in my stomach because I couldn’t eat prior to getting to the hospital and an empty stomach and pain meds don’t mix. I was very loopy so honestly I don’t remember a whole lot. The worse part to me was getting the halo off because I felt this unbelievable pressure release which turned into a really bad headache but they did treat me for that. My head was a little sore where the screws were for a few days but other then that I’d say the whole thing was pretty uneventful. :slight_smile: Best wishes to you!!!

I am scheduled for Cyberknife on 9/9. I have done a bit of research and seems that there are a variety of stories about it. Everyone is different, but most say the treatment is fine, you will be fatigued after it, but the steriods give you pep. Brain swelling can occur for several weeks after and there is definately no heavy lifting or extreme excercise allowed. My doc saud that your chances of a bleed become increased because the radiation starts to wear away at the bad area.

Good luck to you…we will have to share stories after our treatments.

Hello Keith,

I had LINAC (Linear Accelerator) radiosurgery in December of 2009. This is a similar procedure as Cyberknife. My Carotid Cavernous Fistual (CCF) has completely closed as was verified by cerebral angiogram 4 days ago.

I experienced no symptoms or side effects from the radiosurgery at all. My CCF was low flow and small in size so I was a good candidate for this procedure. Hope all goes well for you and I believe you are in good hands at Boston.

Keith, I had the Gamma knife @ UPMC, they have excellent knowledge concerning AVM’s. No needles for the fixture, they used a numbing cream, gave me a loopy pill which took the edge off. I had to have a MRI and then an angiogram for the precise 3D picture. The radiation time was 57 minutes in a comfortable room on my back playing a CD of my choice. They gave me dose in my IV of anti-seizure medication just before I left as the radiation does upset the brain some. The anti-seizure med in my IV burned up my veins which took several weeks to go away. I was only tired for a couple of days. I have not been driving due to I had a seizure, so the wife has to drive. I figured I drove most places for the 1st 10yrs she can drive for a while now. So far only 1 seizure which was the incident that showed me I had the AVM, No leakage, just a short circuit for the seizure. I am not sure I would recommend driving yourself for a long distance for a week or so.
John