CyberKnife or Craniotomy?

What are the pros and cons of radiosurgery, and is this decision (Cyberknife or craniotomy) more or less up to the doctor or is it something he will discuss with me? Is Cyberknife always the better option if feasible? My AVM has been described as “accessible”, but that’s all I know. Waiting for an appt. with neurosurgeon.

John,…

It is my understanding that your neurosurgeon should and probably will discuss all of your options.

Cyberknife, I am not familar with, however, Gamma-knife is of course a radiation treatment, with the possible radiation contamination of surrounding brain cells. In my case, I was told I lost a lot of brain cells due to the AVM rupture and related bleed. Do I want to risk additional loss of brain cells due to a gamma-knife radiation contamination? I don’t know.

Craniotomy, is of course an intrusive/invasive surgical procedure to remove the AVM. Blood capillaries are regenative and will grow back, (hopefully not in the same position as the original AVM), but they will and do grow back. If I go this route, what is the success rate/percentage, and will the AVM develope again. I don’t know.

In my case, an embolism is required to reduce and restrict blood flow in and around the AVM rupture, reguardless of which procedure I should choose.

I also have a third choice, do nothing and monitor the AVM via MRI’s on a regular basis. At my age, (57) this is what I have decided to do. Noting a 3% chance of another AVM rupture in my lifetime.

I am NOT a physician NOR am I a neurosurgeon, I am simply a recent survivor of a ruptured AVM and related brain bleed, and I am only repeating the information given to me by my personal neurosurgeon, Dr. Jeffery Sorenson, with the Semmes Murphy Clinic.

John,…each case and AVM is different, (in it’s own way), listen to your neurosurgeon, read AVM articles, ask questions here, and give yourself the edification needed to make the right decision.

Your friend,…

William

Hi John,

I am in the middle of two cyberknife treatments for my AVM. I chose cyberknife because my AVM was inoperable due to its location in the brain. The biggest con of cyberknife is that the radiation could take up to two years to do its thing, however the benefits are that it is not invasive and it has pinpoint accuracy, beaming radiation to the AVM itself without affecting critical surrounding areas. Here are some links that helped me in my research. Please feel free to contact me at anytime with any questions you may have. I’m not a doctor but a cyberknife patient who asked LOTS of questions!

Keith

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

http://www.cyberknife.com/

Has your neurosurgeon told you that any medical procedure could lapse any time?

I’ve had craniotomy in 1998. It had been successful, and–according to my doctors–the AVM that ruptured years ago wasn’t the one acted upon then.

Radiosurgery could be less troublesome. Theoretically, doctors have to take care of their patients. Any decision to any medical procedure should be discussed though. It is your health and money, after all.

I had a craniotomy ( I had no choice about treatment…almost died from a bleed and the craniotomy was the best immediate option) and was told that once it’s gone, it’s gone and does not grow back. Can it really come back ???

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From what I’ve read, you don’t have to worry about that. If the whole AVM was resected, you are good as new! I hope I can say that soon, too.

mary kate said:

I had a craniotomy ( I had no choice about treatment…almost died from a bleed and the craniotomy was the best immediate option) and was told that once it’s gone, it’s gone and does not grow back. Can it really come back ???

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I had my crainiotomy Jan. 21 and am 100% today! I am still need a little more rest than I did before, but that could be the meds as well. I was told that for me crackin my nut was the best treatment for me. He said if we can get in and get it then that is what we should do. I was so confident with my surgery team I never even thought of a second opinion. I almost feel like I got out of this easy. I mean it was found on Nov 18 embolization Dec 8 and surgery Jan 21 and now I am back to work and back to life. Quick and to the point. With cyberknife you have to wait years to see a change. I couldn’t wait that long. I guess if it wasn’t able to be removed with a crainiotomy I would’ve had to, but I am glad I didn’t and honestly from all I have read cyberknife can be just as painful as open surgery. Just be sure to read, ask questions and weigh all your options.

Excellent! I’m so happy for you and I hope for a similar result. Congratulations on your strong recovery, and thanks for being there for the rest of us.

Jamie Pantelis said:

I had my crainiotomy Jan. 21 and am 100% today! I am still need a little more rest than I did before, but that could be the meds as well. I was told that for me crackin my nut was the best treatment for me. He said if we can get in and get it then that is what we should do. I was so confident with my surgery team I never even thought of a second opinion. I almost feel like I got out of this easy. I mean it was found on Nov 18 embolization Dec 8 and surgery Jan 21 and now I am back to work and back to life. Quick and to the point. With cyberknife you have to wait years to see a change. I couldn’t wait that long. I guess if it wasn’t able to be removed with a crainiotomy I would’ve had to, but I am glad I didn’t and honestly from all I have read cyberknife can be just as painful as open surgery. Just be sure to read, ask questions and weigh all your options.

John,

I had 4 embolizations and then a crainiotomy in 2005. My AVM was between the frontal and parital lobes about an inch below the surface of the brain. It was too big (just larger than a golf ball) to just have the embolizations and cyber knife was not even an option due to its size. For me, the embolizations were not a problem, just frustration sitting in ICU for 24 hours to be certain there were no complications. The surgery took 17 hours and was extremely successful. I had a few complications due to another medical issue…Blood Clot and Pulmonary Embolism…due to a blood disorder called Factor V Leiden. Due to the location of the AVM I had trouble with my arm and leg. Physical Therapy resolved the issue and I am doing very well today. The bottom line? Listen to all the options, make your decision and be positive.

Hey John, I think it all depends on the size and location of ur avm with regard to a crainiotomy. This is the option I had hoped for over a year ago when I began treatment. I’ve had 4 embos and a ventricular shunt for hydrocephalus after the first embo. My neurosurgeon who I trust with my life, decided after a few months and several angiograms that surgery was not an option due to the risk of left side paralysis and vision loss. The plan was then for Cyberknife, but after meeting with the radiation/oncologist who assists in the procedure, his words were…“Greg, I’m afraid I’ll hurt you.” Well the 4 embos and shunt have relieved virtually all my symptoms and I am as healthy as I’ve ever been, so to me the risks of radiation were too great also. I have not bled, and have read(and been told) that larger avms tend to rupture less frequently, so I will continue living with my avm. I’m okay with that!

My son had 2 craniotomies, so I don’t have experience with radiosurgery, but I did a lot of research. I’m sure you have already discovered neither option is without risk and/or possible complications. One thing I found is some of the recommendations we received from doctors were based on their own experience with AVM’s. So make sure you have a good neuro who deals mainly with vascular brain malformations and treats a lot of AVMs (even if you have to go out of your area for consult). Our decision was based on the fact that with surgery once it is gone it’s gone. With radiation it can take 2-3 years and for me the fact that once that radiation is in his brain it would always be there. Even though it is very directed it still damages healthly tissue, Proton Beam was the one I felt seemed the least damaging. The brain swelling and necorsis even a year or two after treatment was very scary to me. Hope this is helpful, but finding the right doctor is key.

I would listen to the doctors because I was actually hoping for craniotomy because than its over and done with, as opposed to radiosurgery doesn’t always work and can take years. However after talking to many doctors they told me it was not a good idea because mine is in near where my motor skills. There are pros and cons to both but it really does depend on size and location. I can say radiosurgery (which I just started my treatment today) can leave you with some unwanted side effects but so can craniotomies. It really should be talked about with your doctor. Ultimately it is your decision. But you need to hear the dangers of your avm based on where it is. I would research as much as possible beforehand though but just don’t make any firm decisions until you see the nuerosurgeon

Thanks, Alyssa. Good luck with your Synergy treatment! I will be discussing this with my doctor tomorrow. .

Alyssa Walker said:

I would listen to the doctors because I was actually hoping for craniotomy because than its over and done with, as opposed to radiosurgery doesn’t always work and can take years. However after talking to many doctors they told me it was not a good idea because mine is in near where my motor skills. There are pros and cons to both but it really does depend on size and location. I can say radiosurgery (which I just started my treatment today) can leave you with some unwanted side effects but so can craniotomies. It really should be talked about with your doctor. Ultimately it is your decision. But you need to hear the dangers of your avm based on where it is. I would research as much as possible beforehand though but just don’t make any firm decisions until you see the nuerosurgeon

I think your neurosurgeon will best be able to guide you based on location, and they won’t even be able to do that well until you have had a cerebral angiogram. Before the angio, my daughter’s surgeon thought surgery for sure, and after angio switched to gamma knife, sent for 2 more opinions and went back to surgery. She had her surgery in January of this year, and you would never know she had it, apart from the spiky hair that is regrowing. Personally, I was more comfortable with the surgical option, because I was worried about the effects of the radiation on a young brain. Most importantly, I would get several opinions, because the treatment of AVMs is not black and white, and each surgeon has their preference on how to treat. Our surgeon sent out for the other opinions for us, and strongly suggested we do so. We ultimately ended up using him as our surgeon, but did travel to talk to other surgeons. We will be praying for you as you navigate these difficult waters.

Thanks, Susan. My appointment is tomorrow and I have a great surgeon. I will take your advice and listen carfully, ask lots of questions, and then double-check. Thanks so much for sharing your story … and for the prayers!

Susan Troop (Lindsey’s Mom) said:

I think your neurosurgeon will best be able to guide you based on location, and they won’t even be able to do that well until you have had a cerebral angiogram. Before the angio, my daughter’s surgeon thought surgery for sure, and after angio switched to gamma knife, sent for 2 more opinions and went back to surgery. She had her surgery in January of this year, and you would never know she had it, apart from the spiky hair that is regrowing. Personally, I was more comfortable with the surgical option, because I was worried about the effects of the radiation on a young brain. Most importantly, I would get several opinions, because the treatment of AVMs is not black and white, and each surgeon has their preference on how to treat. Our surgeon sent out for the other opinions for us, and strongly suggested we do so. We ultimately ended up using him as our surgeon, but did travel to talk to other surgeons. We will be praying for you as you navigate these difficult waters.