Hi There - My mother had Cyber Knife Surgery last August and was back to work in 5 weeks. Then in January 07 she was feeling tingling in the legs and arms and nausea. She was told it was from brain swelling. The swelling continued and her health continued to decline. The brain swelling was so bad she couldn't swallow on her own and was having side effects from steriods, so the doctors put a traech in her neck. She is now home with 24 hour care and her blood pressure is so low we can't even get her out of bed for fear of her passing out. Because of the medications she has all sorts of complications - feeding tube, etc. The doctors have advised that the swelling can last up to two years. It has now been over a year since the Cyber knife surgery and she is in such a critical state. Has anyone experienced such circumstances? Thank you.
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Cyber knife surgey recovery
- By Mara
- Posted September 27, 2007 at 7:53 pm · 11 replies
- In Tips for caregivers
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- By milrod
- Posted September 30, 2007 at 6:52 pm
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My Kaiser doctor recommended CK surgery at Stanford U, for a slow-growing brain tumor. I had the required consultation with the CK staff earlier this year. After hearing about all the possible after affects, and realizing the technology was very new, I decided to wait for awhile before undergoing the treatment. Mara, your report was distressing, and I'm so sorry to learn of your mother's problems.
I'm wondering if the technology is flawed. Does anyone else have any experience with this?
- By blichy
- Posted October 1, 2007 at 7:30 am
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I was also distressed to hear about this reaction. I am also waiting after receiving conflicting recommendations about SRS. The doctors at Hopkins think I have should have the SRS ASAP for a small, slow-growing brain tumor; the doctors at NIH recommended waiting until the tumor grows and having traditional surgery.
I was also wondering about the comment that Mara's mother took 5 weeks to return to work after the procedure; my understanding was that the recovery after the procedue was immediate and the brain swelling could occur 5-6 months after the surgery. What were her problems immediately after the procedure?
Thanks,
Beth
- By Mara
- Posted October 1, 2007 at 12:00 pm
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Good morning - I truly am sorry for causing you both distress as I understand completely how difficult your circumstances are. To clarify, my mother was out for 5 weeks directly following the procedure because she was fatigued and suffering from nausea. It is true in my mother's case that the brain swelling began 5-6 months after the procedure - her procedure was in August and the brain swelling began in December 06' and has persisted to this day.
- By milrod
- Posted October 2, 2007 at 1:18 pm
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Mara, did your mother's surgery involve a large mass or vascular malformation in the brain? Please provide a little more information about what was done. From other reports, this seems like an unusual set of complications.
- By bamagirl
- Posted October 2, 2007 at 4:25 pm
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i was wondering what cyber knife is? I had gamma knife done on a brain tumor about 1 month ago. are the simular treatments ? I have never heard of cyber knife. I actually had never heard of gamma knife before 1 month ago. My nuerosurgeon said this treatment had less side affects that the standard operation, and since i had standard done on the right side this was a better option for the left side. I would like to know more about cyber knife. Im sorry to hear about these affects on your mother. I will keep her in my prayers.
- By dani
- Posted October 3, 2007 at 2:03 pm
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I would like to thank you so much for sharing this. I have VHL and I am new family advisor on what treatments they should follow. I know the steroids are really dangerous, and I wish your mother well.
- By Megan2
- Posted October 3, 2007 at 3:50 pm
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Hello Milrod, my name is Megan and I am Mara's sister. I can answer your inquiry:
My mom had a hemangioblastoma of 1.5 centimeters on the brainstem. She had the CK surgery at Stanford. The treatment of the tumor was succesful, because it will not grow, but the side-effects, though unpleasant, are more common than previously believed -- everyone should be aware of it. Even though my mother is uncomfortable, she still thinks she made the right decision because the tumor was in a precarious position. The benefit of no incision was worth it, but the recovery is going to be much longer than we planned. Please continue to work with your medical team. There is a split of opinion in this matter. Good luck and god bless!
- By milrod
- Posted October 3, 2007 at 8:07 pm
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CyberKnife is a new variation on radiation therapy, similar to but an improvement upon Gamma Knife. It was developed at Stanford, and is being actively promoted by their medical people.
If you "Google" cyberknife, you'll find lots of information about it.
- By Mara
- Posted October 6, 2007 at 12:37 pm
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Thank you back! It is hard to find people who understand what our mom is going through and so we thank all of you for your support!
- By joyceg98
- Posted October 16, 2007 at 2:22 pm
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Cyberknife is one form of stereotactic radiosurgery. They are generally called by the name of the machine -- in this case, the cyberknife machine. Gamma Knife, Linear Accelerator, Lineac -- there are many different brands of machines, each with slightly different characteristics, but all of them delivery finely focused beams of radiation to the "target" tumor.
There is no particular flaw in the machine or the technology, but like all technologies there are limits to what it can do. We have learned through cases like this one that there are some tumors that will respond well to this treatment, and others that will not. You have to "qualify" the tumor for the procedure.
For some perspective on this problem, we worked with a mother and two sisters who all had stereotactic radiosurgery -- one very successful, one that wound up having to have open surgery anyway, and one near disaster like this one. The article "Caution urged..." will describe the pros and cons. It can be great. It can also be the opposite of great.
See http://vhl.org/stereo
in particular the article "Caution Urged..."
In the Handbook and on that page you will find a list of Questions to Ask Your Doctor...
As long as you through that list of questions with your doctor, and you and your doctors agree that this tumor is a good candidate for the procedure, then the recovery should go well.
If not, it is better NOT to do this procedure on a tumor that's a little too big, or in a location where there might be a problem. Once you have the treatment, they can't take it back -- you have to ride it out. And as Mara describes here, it can be a troublesome ride.
I hope things go well for your mother. When she begins to be a little less ill, that's a good sign that you have passed the peak of the swelling curve, and hopefully she is beginning to heal. You might want to keep a log so that you can notice the somewhat subtle changes. If you want to call and talk about it, I am glad to speak with you at 1-800-767-4845.
All best wishes,
Joyce
- By raekel
- Posted July 4, 2009 at 9:17 am
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THANKS FOR YOUR WONDERFUL NOTE JOYCE. MY DAUGHTERS MARA AND MEGAN POSTED IN 2007 AND THIS IS THE FIRST TIME I'VE READ THIS DISCUSSION. AS OF JUNE 2009, I THINK I FINALLY PASSED THE PEAK OF SWELLING FROM CYBERKNIFE. IN HINDSIGHT, I DO NOT RECOMMEND CYBERKNIFE FOR VHL BECAUSE RHE TECHNOLOGY IS TOO NEW AND THERE IS A FAILURE TO REPORT DISASTEROUS OUTCOMES LIKE MINE. IT BOTHERS ME THAT STANFORD'S CYBERKNIFE IS EVEN PUSHED IN T.V. ADS.
IN MY CASE, THE 1.5 CM HEMANGIOBLASTOMA THAT HAS BEEN FOLLOWED FOR YEARS SUDDENLY BEGAN GROWING AGAIN. IT IS IN A PRECARIOUS POSITION ON THE BRAINSTEM. UNFORTUNATELY I WAS NOT INFORMED THAT SWELLING OF THE TUMOR WAS LIKELY, BUT WAS INSTEAD TOLD THAT SWELLING WAS RARE. I HAVE SINCE LEARNED THAT SWELLING OF VHL TUMORS IS COMMON. UNFORTUNATELY, I THINK MY SURGEON FAILED TO REALIZE THAT THERE WAS NO ROOM IN THAT LOCATION FOR WHAT I NOW KNOW IS INEVITABLE SWELLING. AND I STILL DON'T KNOW IF THE SURGEON ERRED ON THE RADIATION DOSE--DID HE GIVE ME TOO MUCH?
MY COUSIN , WHO HAD A SIMILAR TUMOR, IN THE SAME LOCATION, WHICH WAS SLIGHTLY LARGER, HAD WHAT APPEARS TO BE GOOD RESULTS FROM THE CYBERKNIFE. BUT WE DON'T KNOW IF HER TUMOR STOPPED GROWING ON IT'S OWN, OR IF THE SAME DOCTOR USED A DIFFERENT RADIATION DOSE. THE SURGEON TOLD ME THAT IN HINGSIGHT, HE WOULD HAVE SENT ME TO OPEN SURGERY AND THAT HIS NEXT PATIENT WITH A SIMILAR TUMOR WAS REFERRED TO OPEN SURGERY. GEE, TOO LATE FOR ME. AT LEAST I HAVE A CHANCE OF MAKING UP TO A 70 PERCENT RECOVERY AND I'M WORKING HARD ON IT. THANKS FOR YOUR POSTS, MARA, MEGAN, JOYCE, AND EVERYONE ELSE. RAEANNE
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