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AVM Survivors Network

What treatment for brainstem avm

#1

Eight yrs. ago we were told not to do gamma-knife for the avm, because of the risks. Now that it bleed out again this year the doctor got mad because we are afraid to do the gamma-knife. we are confussed on what to do. I told my husband it was up to him, they put a shunt in his head to keep the fuild off. Someone please help, if u had the gamma knife, and if it help u. Thanks for your help

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#2

Hi Terri,

From what I've heard, AVMs in the brainstem are the riskiest to treat due to potential collateral damage. Also, I think I've read that if you have had one bleed, you are more likely to have another. That might be why the DRs are pushing GK now.

My suggestion is to keep studying and keep asking questions. Wouldn't hurt to get a 2nd opinion either.

Best wishes,
Ron, KS

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#3

Hi Terri. I did a search on here for you…
http://www.avmsurvivors.org/main/search/search?q=Brain+stem
There is a sub-group on here you may wish to join…
http://www.avmsurvivors.org/group/radiosurgerypatientsgammaknifeother
You may also want to read Ben Munoz’s profile page…
http://www.avmsurvivors.org/profile/benmunoz

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#4

Hi Terri!!! I too have an brainstem AVM and the first couple of neurosurgeons that I went to also told me not to anger it and that surgery, embolism and radiation were too risky. I refused to believe that doing nothing was a good choice since I had already had a different AVM removed in 2000 after a bleed. I went to KU Medical here in K.C. and discovered they have a machine (Novalis TX) that allows the radiation dose to be broken up to minimize the damage to surrounding tissue. I went in for treatment for 5 days in a row, one hour a day. During the treatment they changed the angle/location of the beam 10 times. This allowed smaller doses from multiple positions. I have been in for my 6 month follow up and it showed "significant reduction with no visible necrosis". I have just reached the 9 month mark and so far so good. The term my doctor used was "fractionated radiation". My doctor has said his biggest long term concern for permanent side effects is my hearing. Still much better than the first doctors who told be I would probably no longer be able to swallow!! Hope this helps and hang in there!!!
Godspeed!!

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#5

When it first happened 8 years ago, that was the 1st and 2nd bleed out, we seen one of the Head of Neuro at Emery, also 4 other Neuro doctors said then they would not touch it, much to dangerousbecause it is sitting right on top on the brain stem. To many risks involed. So in Feb. this year it bleed out again, now this doctor wants Carl to have the gamma-knife, he said the risks are still the same, but a slight chance. But that is what h said when he had to put a shunt in his head and then 2 days later take it back out, then put it back a week later because something went wrong the 1st time. we r so confessed on what to do. It has bleed out a total of 3 times, 2 in 2004 and once this year, but this year was worse. Carl already has headaches everyday since the 1st bleed and sometimes double vision,too.

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#6

Thank u Barbara, that was vry sweet of you.

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#7

Where was yours at on the brainstem, my husband Carl's is right on top in the center of the brainstem. We are just so confessed on what to do. We have had like 5 different opinions and they all said they would not touch it the risks were not worth what damage it could do if they done the gamma knife. Now this doctor is telling us to do it. Carl already lives with a headache everyday and sometimes double vision when the headaches are real bad. He has already lived like this for the last 8 yrs. They said the side effects would be blind, paralized, or even death. So we don't understand why this doctor keeps on about doing the gamma knife. And if it is worth taking a chance by having it done, also it is done by out patient surgery. Thanks u Stefanie, please tell me more about your AVM and treatment, also any side effects you might have from it.

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#8

I also visited several neurosurgeons who would not even discuss treatment options without painting a very bleak future. I later realized that once surgery was ruled out, I needed to find someone who specialized radiation treatments for cancer, tumors and particularly AVMs. I was finally able to set up a consultation with a neurosurgeon and a radiation oncologist together. The neurosurgeon, radiation oncologist and radiation interventionist worked together to determine the treatment. I cannot say that the possibilities for side effects are not scary because they are no doubt. The only other option I had was to do nothing and the potential side effects of a bleed were much worse.
As for the AVM symptoms I have a constant headache as well and on bad days I am dizzy and nauseous. As for the treatment symptoms I was very tired for the first couple of days (hard to tell how much was just stress) and find that I tire easy still. The treatment itself was completely painless. I drove myself to/from all of my treatments so I could not be medicated (I do not recommend this if he suffers from any clastrophobia).
I found this site www.novalis-radiosurgery.com and it is worth a read. It is a relatively new procedure for AVMs but it has been used to treat cancer and tumors in the brainstem and spinal cord area for some time now. Every AVM is different so there is no "standard treatment plan" but it may be worth asking the question. If you have any questions please feel free to ask...I'm happy to help any way I can!!

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#9

I too have a brainstem avm and have been told not to do a thing and just wait/let it be. I’m very nervous to just wait and just hope for the best. Do you mind sharing the name of your doctor?

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