Deciding on treatment for large brain avm

To whom this may concern,

Following two consecutive seizures I am a 38 year old woman who was recently diagnosed with a "moderately large ~ 4.9 cm AVM in the left frontal "eloquent" cortex of my brain with inter nidal anneurisms -- all drs say it is too large/ too risky for surgery. I have spent the last several weeks trying to decide between two similar but different treatment options at UCSF and Stanford. UCSF recommends gamma knife alone, and Stanford recommends pre-embolization and Cyber knife. The decidion has been somewhat overwhelming with multiple moving parts.I am told radio alone has a 38-50% chance of obliterating the AVM and while I prefer the integrated professional manner of the Stanford doctors over UCSF where I have had very mixed experience, I am admittedly nervous about the added risk and number of procedures associated with embolization.(Stanford is also giving me the option to try only cyber) I realize I am dealing with two reputable and excellent institutions but any guidance you can provide would be greatly appreciated. This has been a very difficult decision and while I have read much of the related literature, it is difficult to understand exactly where my particular AVM fits in.

Many thanks in advance.

Margot

Gamma Knife was my only option the drs gave me when I had it done. Mine measured 5 cm when I agreed to have it done. The problem with the bigger avms is, it often takes two treatments. The radiation stays alive in your body for three years. When that three years is up. If the avm isn't completely gone. Then they will do another treatment.

I hope this helps you,

Ben

My AVM was in the right frontal lobe and also large. I had four embolizations prior to surgery. The surgeon at University of Illinois-Chicago removed it over two years ago. I am living a normal life and thank God everyday.

Thank you Doug, I am also strongly leaning in the direction of pre cyber knife radiation embolization as it is my understanding that this will likely reduce the amount of radiation I am exposed to. I can also choose to do embolization later but it seems like pre radio surgery embolization makes sense because it will provide the medical team with additional info as well. Do others have any thoughts?

Yes. this is my understanding as well with both forms of radio surgery. It seems like pre-embolization might reduce part of the AVM and speed up this process/ and or make it have more impact.

Thank you for taking the time to respond!

Greetings!

Well, we did all three: Proton Beam radiation, at a small dose we learned later. After two yrs, the AVM had not changed. Stanford suggested and did four embolizations. Each embo reduced the AVM size significantly--and her's started HUGE--it covered the whole left hemisphere of her brain.

An aneurysm showed up on the scans, so Chari had it fixed surgically after embo #4.

Then she did another round of PBR. About a year later, the AVM, which had been declared inoperable initially, was deemed small enough they could operate to remove the remainder, so that's what she did. Her AVM is GONE!

First PBR was at Mass General in Boston; all the rest was done through Stanford (and Loma Linda for PBR).

A tough decision on where to be treated. One of my key questions is "How many AVMS like mine have you fixed in total, and how many AVMs like mine have you treated in the past year?" If there is a radical difference between the two places, I go with the more experienced one.

Best wishes,
Ron, KS

The dr's removed my sons AVM but hes 7, a young boy, in your case you have to weigh the options out, Ive heard of people leaving the avm's untouched too. Ive also heard folks get them emobilized and have to go back several times, which you wouldnt want.

Ron, thank you for the very thoughtful and personal reply. This makes me feel better about the decision to begin with embolization at Stanford tomorrow.

I did not ask those questions specifically, but it seems that they have more avm experience than ucsf

Many thanks for your time

You are welcome! When you see Mary M, say hi from Ron and Chari from KS--she'll remember. She's a sweetheart!

Best wishes,
Ron, KS

If the avm isn’t causing any hurt then I’ve heard of people that leave the avm and nothing ever comes of it …I had a medium size avm in my cerebellum was having it embelished and during had a bleed I no it’s hard but think long and make the right decision mine was right but wrong also such a complicated mess that I don’t want to bore you about…good luck with everything x

Hi
My avm is on the right front side of my brain…it measures 5 cm. The team at Toronto western told me they do not want to do anything about it because of its size. I would love to get rid of this avm but it is too risky. It is a big decision that you are facing and I wish you the best of luck. Keep looking into it and I hope everything works out great for you.
Take care

I have always gone the same route aa Ron suggested. I wanted experienced hands in charge of my daughter’s AVM. Right now, I prefer Stanford, which is where my daughter’s AVM surgery was last done in 2011.

Sounds like a tough decision for you. You’re fortunate to have very competent doctors so close. We are in the Midwest. My daughter’s AVM is gone for now. Since they can regrow in children, my daughter will have to be monitored until she reaches adulthood. You can imagine the challenge of finding a local neurologist to keep an eye on things. We have even had Mayo doctors shake their heads and comment about the complexity of my daughter’s health.

Good luck with your decision – and most importantly, your treatment.

Well u r lucky to be near stanford dr gary steinberg removed mine he is amazing u must go to him . Look him up .AMAZING