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Post by Wilfred Blummer on Nov 6, 2011 9:39:27 GMT -6
Six months ago I had surgery (Laminectomy) for cervical intramedullar ependymoma. The tumor size is 74mm by 14mm. C5-C6 to T2-T3. Can I consider Cyberknife an alternative to surgery considering the risks associated with it?
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Post by kansasmom on Nov 6, 2011 12:34:16 GMT -6
Wilfred, if I've understood you correctly your ependymoma is still growing after surgery and you need more treatment. Did I get that right?
Are you looking for someone who had cyberknife treatment and could share their experience? I've not seen anyone here on the forum say that they have had cyberknife, but I'm sure they will leave a reply if they have.
I'm sorry you need more treatment. Is your neurosurgeon someone who works with spinal cord tumors regularly? What was the outcome of your surgery 6 months ago? Did they remove much of the tumor, debulk it to improve your situation, or just take a biopsy? Did your neurological symptoms get worse after surgery?
My best suggestion is that you get several opinions before deciding on your next treatment. Dr George Jallo helps many of us here with a 2nd opinion. You can get his opinion by sending MRIs and reports to him (he does not charge). Depending on where you live maybe someone can suggest a local "expert" for you to visit.
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Post by Todd on Nov 6, 2011 15:16:35 GMT -6
When I was first diagnosed, I found info on the cyberknife and thought it would be my salvation. The NSs I saw indicated I wasn't a good candidate for cyberknife because ependys really need to be removed as they can generally be completely removed without nerve entaglement.
irradiating the spinal cord isn't much better than surgery as I have researched and read stories from those who have had it. it still damages the spinal cord and can leave you with all that goes along with that.
have you considered seeing a couple of NSs and find out what they think?
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Post by Linda51 on Nov 11, 2011 10:07:02 GMT -6
There has been some in the group that has had cyberknife and had good outcomes from it. There was a guy name Steven from MD that started a long thread on the cyberknife. This was on an old forum so it may be gone by now. For Steven his tumor was in the lumbar area and there was some controversey whether this was the right way to go or not. Most NS says no to this because there is not enough of data to show if it works. For Steven it did work and he had many people to write him, call him and even had some to take the cyberknife route. For those in the group that has had good outcomes they leave the group. I have heard taking the cyberknife approach the tumor stays there but it not growing.
Steven has pass away not from his spinal tumor but from lung cancer. We do have a Cyberknife doctor on the SCTA Board of Directors. You can contact him at henderson@fraserhendersonmd.com There might be a fee to consult with him by phone but in the past he takes the fees he received and gives it to a non profit organization. In the past he has given donation to the SCTA. You can also hear Dr. Frazier Henderson replay on the teleconference page on cyberknife.
~Linda
PS: From my comment cyberknife was done mostly on spinal tumors not spinal cord tumors. There is a difference.
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Post by femmyreyn on Nov 13, 2011 23:05:21 GMT -6
Is Cyberknife the same as Gammaknife radiosurgery? One of my surgeons doing my surgery Wednesday is UCSF.s Dr. McDermott. 'Dr. McDermott's clinical specialty interests include stereotactic neurosurgery and Gamma Knife® radiosurgery, in particular for tumors of the central nervous system, meningiomas, and skull base surgery.' I asked about the cyberknife but I am going in for a biopsy and this was not an option because they don't know what it is. But he did say the cyberknife could still leave deficits.
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Post by Todd on Nov 14, 2011 9:13:41 GMT -6
cyberknife is truly an incredible machine. I do believe it's the same idea as the gamma knife, but it's more accurate and, according to the brochure, leaves less damage to surrounding tissue. It really reads like something out of star trek. Used for getting rid of those tough to get rid of and in-accessible tumors.
at least that's the story on the bathroom wall.
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Post by madberserk on Nov 14, 2011 12:13:01 GMT -6
Thanks to everybody for helping with this matter. I had laminectomy and biopsy was taken at surgery time. After it I was unable to walk without a walker but I´m recovering faster. Two doctors that were consulted said that Cyberknife is not an option for ependymomas because surgery will take the pressure out of the spine.
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Post by Howard S on Aug 25, 2012 19:56:26 GMT -6
I had a drop mestasis ependymoma at S1, and successful Cyberknife treatment. My first ependymoma was removed with surgery at L-3, L-4. This time, the tumor was coating nerve roots and would be impossible to get all of it.
Like others, several neurosurgeons said no to Cknife. However, one said I had nothing to lose to try it as the surgery was very risky. He is a top neuro...his name is used here a lot.
I am almost two years out with clean MRIs, so I will keep everyone posted. Linda knows how to reach me for more questions....
Best to everyone, Sharma Howard
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Post by Ben on Jan 15, 2015 17:39:53 GMT -6
Sharma, Are you still on this forum? How is your condition? I am battling a somewhat similar condition. In 2009 I had a large ependymoma resected from my lumbar area. For 3 years it was monitored with no issues. Then in 2012 an MRI spotted multiple small regrowths in various areas. At that time I underwent 7 weeks of low dose, somewhat focused, radiation to my spine. The radiation left me terribly sick for months and my stomach/intestines have never forgiven me I've recently moved to the San Francisco Bay Area and continued monitoring of the tumors but it looks as if all previous tumors are larger, and there are 2 addition ones The doctors here highly recommend the cyberknife as the next step in treatment. I've gone over the risk with the Radiology Oncologist and it seems that at this point, it's my best option Anyway, just curious about long term effects Hope all is well
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Post by Ana on Apr 12, 2015 16:33:01 GMT -6
Hey Ben,
Seems like partly we've gone through the same story during the smae years.... Late in 2008 I was diagnosed a large ependymoma l1-l4 , Had it removed . Than in 2012 I got a recidive but outside of the canal, so got it removed again followed by a radiotherapy... Then now in 2015 my walking started being so awkward, no pain though and the latest MRI finally revealed a slight growth of a small lesion... Since it's very small - gamma knife or cyber knife is probably the best option. COuld you please share some links where I can read more about it? IS there someone gone through that?
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