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AVM Survivors Network

Concerns on GK retreatment of sons AVM

Our son had Gamma Knife in 1989 of a very large AVM deep in the mid brain. We were advise not to retreat at that time. Now at age 36 Dr. is advising retreatment. Our son has progressively gotten worse over these years and is confined to wheel chair now. We feel our Drs. our just saying why not he has nothing to lose we understand that thought. We also know he is not in any pain now and are concerned with side effects of retreatment. The Drs. plan on at least two maybe three treatments. Any thoughts or advise?

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Dear @infoneed

If your concerned about possible side effects of the retreatment I would raise these concerns with the neuro-radiologist consultant. You could look for more opinions from other neuro-radiologists and neurosurgeon specialists in treating AVMs - you could send them recent angiogram scans of your sons AVM.

Here is a post with helpful questions you could ask to get more information from the consultant too:

You could look into the other radio-surgery options too: proton beam, cyber knife and see if these would be options for your son’s case and ask about the differances in risks/benefits/time frames/ expected success rates compared to gamma knife? If your sons progressively getting worse, it would be understandable that if its safe, retreatment would be important to look into.

Your concerns about the specialists reasoning for changing their minds on treatment being an option are totally valid and understandable. However potentially, this change of decision could be based on other things too:

  • your sons AVM may have changed or causing more impact on surrounding tissues since your son as you described has progressively gotten worse over the years potentially making benefits of treatment now outweigh risks when compared to the risk of having more impact on his health going without treatment.

  • technology and experience with radiosurgery has developed since your son was last treated - perhaps they are now more confident in treating your sons AVM than before.

Hope it’s ok - I have changed the title for your post and moved it to “symptoms and treatment” so hopefully more people who your post is most relevant/relatable to will recognise and respond.

Best of luck,

Corrine

Thanks, the Drs. are not aware of changes Cody is new to them. They are aware of his continued deterioration and have made decision based on this. I do believe they think they may be able to help him. My concern is making things worse. Any thoughts are welcome. Ron

Ron,

In the UK, one of the doctors’ principles, not least in neurosurgery, is “first, do no harm”. This is an excellent principle and I would hope the doctors you are engaging with would have the same in mind. Unless they really believe they can make a tangible improvement, without significant risk of breaking more than they fix, they should be telling you that it would be best left alone.

As well as your own concern for the right thing to do, talk to them about it: I would hope they will give their professional opinion on the benefits and risks.

Best regards,

Richard

Thanks, Dick we will proceed with those questions and try to pen them down on their real thoughts and opinions of success of treatment.

Ron

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