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Does anybody want to share their experience with cyberknife surgery for brain tumors? If you've had this surgery, can you please tell us what worked for you and what may not have worked for you.
Thanks,
Raeanne
Raeanne,
I wasn't able to utilize the cyberknife procedure. However, I was able to utilize the Gamma Knife. I was very nervous of this however, after much research and thought my husband and I decided that this was the best procedure for my situation. I was only down for about 3 days due to travel time. Other than that I was up and back to work within the week. I had some swelling but the tumors were small enough that the swelling didn't affect me to much. I had the gamma knife procedure in 2004 the tumors have shrunk but they have not totally disapeared. In March I will be going back for another follow up appointment. I am hoping that the new tumors can be also taken care of with the Gamma Knife. I hope my expereince helps you decide what is best for you.
Thnnks for the response. I did have cyberknife surgery in August on a brainstem lesion, and did develop uncomfortable side effects that lasted 5 weeks. I returned to work, but some of the symptoms have recently returned and although the tumor has not grown, my doctors have not told me why I'm beginning to feel sick again.
I was curious if anybody else had experience with this.
Take care,
Raeanne
Was there a reason you chose the cyberknife rather than the gamma knife? What were some of your side affects from the cyberknife? I will have to make some choices this up coming spring and I would like to know a bit more if you wouldn't mind sharing.
Thank you.
Christol
My husband has had both GammaKnife and CyberKnife radiation. He had GammaKnife on a brain tumor at Mayo Clinic in 2000. It was effective in shrinking the tumor. After an unsuccessful brain surgery in 2005 on a new brain tumor, he had CyberKnife radiation. Then we found out he also had tumors in his spine and so they were radiated with the CyberKnife as well. GammaKnife has been around longer than Cyberknife. However, Cyberknife allows for the radiation to be programed to target the tumor from more different angles so that is a plus. Also, Cyberknife can be used on tumors other than brain tumors and GammaKnife cannot. Both forms of radiation work about the same way and seem to be effective on the hemangioblastoma tumors associated with VHL. My husband did not want to have back surgery after the trauma of his brain surgery and therefore was very relieved to learn about the CyberKnife option. He was in incredible pain from his tumors in the spine and therefore it took many weeks before he got any relief -- partly I'm sure because of the swelling associated with the treatment.
Cyberknife, I have never heard of that. I unfortunately had by spinal cord opened up on three different occassions and I have never fully recovered. I can walk fine, After awhile though, the back pain is unbearable and I have yet to find relief for this. Next time I can at leat bring this topic up with my doctor if neccessary. Thanks!!! I have had gamma-knife on the brain with greatr success!!.
My HMO referred me to Stanford University for the Cyber knife surgery. I chose Cyber knife over open surgery because I have already had open surgery and my recovery was very long. The brain stem legion that was treated by Cyber Knife happened to be on my vomit center and I was told to expect to become nauseated and I did. I also experienced fatigue, and dizziness which improved after five weeks. I now have some numbness and tingling in both legs and feet which recently developed and I don't know if it is related to the Cyber Knife surgery and I am waiting to hear from my doctor. Take Care!
Raeanne
I think that is the mos frustrating part of dealing with all this. . . not knowing if the pain, fatigue, nausea, etc. is from the tumors, the treatment (radiation), or from the medication. My husband continues to take painkillers for pain & tingling both in his face on his arms and legs. With tumors in his brain and his spine that have been radiated it's hard to know what is causing what symptoms. . . but he's definitely better off now than he was before radiation. The tumors in his spine caused him incredible pain. The dr told him we can't radiate every little spot they see -- but always must weigh out the pain & symptoms with the risks of causing other damage. That always seems to be the case when dealing with multiple tumors.
Thanks for the note. My doctor has confirmed that the numbness and tingling in my feet and legs as well as the nausea and fatigue have been caused by radiation edema from the cyberknife surgery I had last summer. Hopefully this is temporary and I'll just need to wait this out. I still believe that chosing cyberknife surgery was right for me anyway.
Raeanne
Hello everyone! My name is Shawn and I am somewhat new to the site. I have VHL and had a hemangioblastoma in my right cerebellum removed conventionally in nov.1993. I just had a MRI, my first in quite awhile but that's another topic, and it showed a 5mm hemangioblastoma in my left cerebellum and a 1.4cm hemangioblastoma or angioma in my right cerebellum.
I'm curious about those in this discussion how things worked out for them and if anyone has any more up to date info on cyberknife/gamma style surgeries vs. open surgery.
I would appreciate any feedback as I'm sure I will be facing this issue in the weeks to come.
Thank you,
Shawn
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