ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: sandyinwisconsin on October 01, 2013, 04:00:17 pm
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Have any of you had surgery after radiation did not work?
Did you have facial paralysis from the surgery?
SandyinWisconsin
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Hi sandy,
When looking into radiation failures please keep in mind that surgery also has failures.
Both Cyberknife and gamma knife can be repeated once.
Also not all tumours are the same. Different gene defects mean that some AN's grow quickly and others do not. The fast growing bigger ones are the ones that typically create higher failure rates for both surgery and radiation.
At the moment your tumour is small, and if it is in the slow growing category, the chances of success with radiation are very high around 99% As the tumour size increases to 3.0cm, faster growth rates, the chances of success are definitely lower... Not sure of the numbers but I believe they are around 85%. There are genetic differences between AN's and the more aggressive ones are more difficult to treat with both microsurgery and radiation.
As for surgery after radiation. I believe the stats are one third are easier, one third is about the same and one third is more difficult, leading to facial palsy. So if you happen to be in that one third, the results are poorer, and overall that one third gives surgery after radiation poorer results than a first time surgery alone. Interestingly facial palsy after a second surgery is also high.
Please note that I am not a medical professional and these are my personal opinions.
Please do your own research.
Www.pubmed.com is a wonderful source of information to verify what I have written.
Any information you find on the internet should also be discussed with a medical professional, and with AN's you should speak with at least two experienced AN teams.
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After it became clear that my GK treatment had failed, i consulted extensively with 5 neurosurgeons. One of them told me that I had 100% chance of paralysis following radiation. I realized afterwards by looking at his outcomes that most of his patients experience at least some weakness, even without having had radiation before. The other 4 (very experienced neurosurgeons) told me that there is really no way you can tell whether a radiated tumor will be more difficult to remove or not. Some tumors are stickier and harder to remove, and some easier. Exactly like the non-radiated tumors.
There are some publications claiming that radiated tumors are more difficult, but if you check out the statistics, the spread is larger, but the difference is not statistically significant.
My opinion is that in the (rare) case of radiation failure a very experienced surgeon will not find it more difficult to remove the tumor. When I asked the surgeon who eventually did my surgery if it would be more difficult he answered "not in my hands". Indeed I didn't experience any facial problems (other than very mild weakness for a couple of weeks). When I asked him afterwards it it was stickier etc. than average he answered that in some regions yes and in some regions no.
You are doing the right thing by researching your options. With AN treatment there are never guarantees, but doing a lot of research will help you choose the treatment that is more appropriate for you.
Marianna
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Hi Sandy,
I had retrosigmoid surgery 2.5 months after gamma knife. I don't consider my GK to have failed, I feel that it was doing what it was supposed to do. After GK my 2.5cm AN was actually dying (turning very dark in the center) but it also started to swell and started pressing on my brainstem. This started to cause seizures and I started passing out so surgery was highly recommended.
The day after surgery I felt I would finally get better. Eventually my balance, taste buds and even 70% of my hearing returned. Facial paralysis, seizures and double vision also went away. Actually after GK some of my facial paralysis slightly diminished (I could whistle a little), balance got a tad better. Surgery removed part of my AN. After surgery my AN still seemed pretty large (about 1.5-2 cm) but at my 2 yr post-surgery MRI it had shrunk to 1 cm. I developed tinnitus about a year after surgery and it's about the only annoying thing that I have to remind me of my AN. The tinnitus is bearable.
As many folks have said, each AN is different but doing your homework helps. Sometimes I was overwhelmed and would step back. But once I made my decision I was at peace with it. In some ways I was fortunate that I didn't have a lot of time to make a decision. I worked hard after each treatment to try to get better and to try to get off whatever medication I was on. I walked a lot, did balance exercises (in the ANA brochures), facial exercises, etc. I think for me trying to get back to normal helped along with having a great support system of family and friends.
Best wishes on your decision. Happy recovery.