On July 10th I go for my 5 year post gamma knife surgery to see how it went. My last MRI said residual/recurring avm. Prayers appreciated l that it shows nothing. Thanks
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Congratulations! No side effect at all?
I look forward to hearing the result, wishing you the best! John
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My APM has returned. My neurosurgeon is doing a telehealth with me in the morning on Friday. I have to tell him if I want craniotomy to remove it or knife again it’s in my lobe so I don’t know which one to do. I’m scared of so many problems for me Blindness
Avm has returned my neurosurgeon, said leaving it alone and doing nothing is not an option
I hope you have a good day today. Remember, you don’t need to be bullied into an operation by one doctor: you should be able to get a second opinion from another doctor and possibly a third before committing to what you want to do and with whom.
Best wishes for today,
Richard
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He’s a very good doctor. Justin Frasier at UK in Kentucky. He put Avastin a cancer drug in my brain, he and a doctor from Louisville pioneered doing it directly into the brain instead of IV. I thank you for your reply. I don’t know which one I want to do. But I believe him when he says we absolutely can’t just do anything. All my records are in my chart and I can see what it says.
No good results! AVM has returned!
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No side effects. I do great with cerebral angiogram, I’ve gone through my wrist all three times they’ve done it.
Really sorry to hear that Linda. The decision will be difficult, but it does sound like you are comfortable with your Doc, which is so helpful in the decision process. A second opinion is never a bad option, and often is a confirmation which helps in decision. We are with you. John.
Thank you so much John. May I ask which option you would do?
What option would you choose?
That’s not a question for us to answer! But my own view about how I would choose these things is that if the risks associated with one approach are stronger, nastier than the other approach, I’d want to choose the lower risk approach.
If the doc is equal about the risks of each approach, it comes down to your / my own preference as to whether to choose gamma knife or to choose craniotomy. Both are very successful approaches: we have people here who have taken each road: but obviously both do have risks.
I often say that life is not a risk-free thing, so trying to choose a route forwards that is risk free is impossible. Even crossing the road is risky, going up or downstairs is risky but we do these things every day. We mitigate those risks by looking both ways when we cross, or using a crossing point, or holding the handrail on the stairs. In this case, with neurosurgery, we have to place that mitigation with the surgeon, we have to trust them to do the job well. So the other part of the equation is to be happy that the surgeon you’re choosing is the right man (or woman) for you.
When I met my neuro interventional radiologist, I found him difficult to talk to. I had lots of worries about the risks but he seemed somewhat dismissive. He didn’t engage with my concerns but was rather factual about the thing. I found that difficult: not the sort of emotional support I was hoping for. But when I reflected on it, I felt that he was a bit of a scientist or an engineer and in fact, if I was going to trust someone with my brain, I decided I’d rather have the engineer: the guy who knew what he was going to do, how he was going to do it but wasn’t so good at the emotional side. He was my man.
So I think once you’ve got past the risks: if they are about the same: then it comes down to which approach, which doctor you’re most comfortable with. You do want someone who specialises in this area, has lots of successful operations but the other part is are you comfortable with them and their approach?
I hope something I say might help. It is the most difficult thing to choose and we’ve all been there.
Very best wishes,
Richard
That is a question that is so individual and based on so many factors specific to a variety of things.I was presented with two options, craniotomy and Gamma Knife. I chose gamma knife based on the risk being far less, in my case, as my AVM was located on the inner side of the eft temporal lobe, making it difficult to access. It was a size that indicated gamma stood a high chance of success with one treatment. Which was the case. Ultimately the decision was mine but my surgeon answered the question, “If it was you, what would you choose?” He replied gamma knife. It made my decision much easier.
For me it was the right decision, but t was two years until I new that. It is about assessing the risk specific to your uniques factors and being at peace with the decision. It is a very difficult decision. John
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I made my decision, Gamma knife again, September 16
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Sorry to hear this news & pray that whatever option you choose that it eliminates the AVM completely… Keep us posted… God Bless!
Well I tried to have someone else tell me what to do. But you were right! I had to make the decision on my own. Thank you for the support
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You’re right it’s a very hard decision. I was just in such shock finding out that it came back I decided to repeat gammon life. I just hope I don’t have a repeat of the brain swelling and then necrosis. Mine is in my occipital lobe so it’s an eloquent place too! Thank you for responding and the support. I have already lost vision and partially blind so I don’t get on here that often but I will eventually respond. Sorry I am slow everyone.
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If we’ve helped you a small step through the decision process, then that is fantastic!
I wish you the very best with the gamma knife and I encourage you to share how you get on at each stage. Some of us are crazy to be here most of the time and the worries you have, when written out, or the means by which you dealt with the issues, can help hundreds of other people anywhere across the globe because we are all the same and we all worry about similar stuff!
Very best wishes,
Richard
Thank you! I repeated gamma today. But didn’t know it was AVM awareness month