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AVM Survivors Network

Decision time


#1

Hi,
New to the site. It’s awesome.
Briefly Grade 4 left occipital AVM.
Two distinct very strong recommendations.

  1. Embolization x 2 prior to cyberknife
  2. No embolization - straight to gamma knife.

I’ve reviewed the literature and don’t find any advantage to cure rates with the embolization and so am reluctant to take the extra risk for questionable cure rate advantage.

Have any of you had to make the same decision?
Thanks!!


#2

Hello I highly suggest contacting Dr Lawton at Barrow in Arizona, they will do a remote consult for around $150.
He is considered the best in the USA
My AVM is DAVF and was treated with embolism of glue and onyx.
That was my only option , part of my feeders can’t be reached.

I have seen Dr Lawton’s work when he was at UCSF I am a patient at Stanford.

These things are rare and you want the best and experienced.

Angela


#3

Thanks!
So Stanford usually does embo followed by cyberknife in all their patients. Spoke with them too. They seem like a good team.


#4

Hi NWF:

I had the Gamma Knife Radiation procedure about 3 years ago because that was the only option open to me due to the location of the AVM in my Cerebellum. The Gamma Knife Radiation shrunk my AVM by 50%, and I was glad for the 50%. I will have another Angiogram in 2 weeks to see if another Gamma Knife Radiation procedure is warranted. These are not easy decisions to make. I would suggest talking to your doctor’s again to see what their best recommendation is. I had only one option, and so far, I’m doing pretty good. Wishing you the best.

Sharon D…


#5

Thanks. Perhaps I wasn’t clear. These aren’t two ideas I’m considering. These are two different recommendations already given by two different avm neurosirgical teams. I don’t know if anyone who has gone the route of embolization +’cyberknife and wanted to see how it went.


#6

Hello and welcome! It looks like you’re well into figuring out what might be next. I had gamma knife November 10th, 2016 which was 6 months post bleed. My decision was gamma or craniotomy. Based on the location of mine my neuro surgeon recommended gamma knife so made my decision fairly easy, knowing that had it bleed again that craniotomy would be done. So I can’t provide any insight into embolization followed by cyber knife. Keep us is the loop and know you have a ton of sopport and experience from folks on this site! Take Care, John.


#7

Hi NWF,

Just logged in and saw your post from last week. My 17yr old son has a grade 4 left occipital lobe AVM. We ended seeing Dr. Lawton at UCSF before he went to Barrow Institute, Dr. Spetzler at Barrow before he retired as well as our local Oregon Heath Science university hospital…which actually is really competent with AVMs. After ruling out craniotomy due to vision loss risk we were faced with the same 2 options you are looking at. For us we went with Gamma Knife for a couple of reasons (keep in mind this is our situation and yours maybe different)

  1. Gamma Knife has more resolution than cyberknife so the edge between treated and untreated area of your brain is smaller and should be a lower risk of a tumor occurring in the “partially” treated area over time. This was important to us given my son is young and thus would have more time for this to develop over time. It is a very small risk but a non-zero risk.

  2. The UCSF and Barrow institute doctors recommended GK with no embolization and the OHSU doctors recommended Cyberknife and were considering pre-embolization as well. When I studied the pre-embolization I learned there is a chance the glue could pass through the target site and create a stroke in a smaller blood vessel…once again a small risk but when combined with the fact that the GK recommendations were to not Embolize I felt the GK route was a better option for our son.

We are just over a year since my son’s second GK treatment (they needed to do 2 treatments due to the size of the AVM) and he is doing great. We had one check a few months ago and some of the smaller blood vessels were already gone but will take another 2 years for the treatment to do it’s job.

I like the recommendation to get a remote assessment done by the Barrow institute. In all cases I would ask all your doctors to tell you the pros/cons of both options and then you can integrate all the responses on your own.

hope this helps and good luck!

Jeff


#8

I have a cerebellum/temporal DAVF - 2 embolizations performed with unfortunate left eye blindness during #2 - now radiosurgery recommended but I took all the advice here and contacted Dr Lawton at Barrow - second opinion is for embolization - my consult there is October 26 - hoping for the best !


#9

Jeff,
Thank you so much. We went through the same process and made the same decision prior to writing the topic message. I didn’t specify because I am reluctant to say but I am a physician, neurologist, and interventions list and have reviewed over 1000 pages of material pertaining to this special location and size. This is for my 20 year old son. I came to the same conclusion but still… I wasn’t completely convinced. How can you be? The evidence is so hard to rely on and since each avm is unique most of the studies are retrospective and rely on so few cases that there is no standard. This is truly the world of the art of medicine. The doctors who deal with this are so awesome. They make me proud to be a physician. And yet… I still have to help my family sort this out. As a physician we sometimes have to look reality in the face when giving advice. The reality here is that there is no study, no therapy, no treatment paradigm, that doesn’t have death listed as one of the possible outcomes. That’s heavy.
I’ve been lucky enough to have trained at world famous institutions and so had the opportunity to speak with some of the worlds experts personally on this. They are all so great and filled with the type of core values that should make everyone want to become a physician. Yet, at the end of the day, it’s based on many variables. I make decisions every day without being able to drill down to the exact data point. That’s the nature of medicine. Especially the case when it comes to avms. Thank you for sharing your experience. It was very helpful. I wish you the best of results for your child. And thank all of you who were willing to open up their hearts to share your story. This is an awesome site.


#10

For what it’s worth, I read all the outcome research - like you I saw no evidence for the advantages of doing embolization first, and did GK with my kid. As you write, there are no sure things in the AVM world - just have to choose your most favorable roll of the dice. It is worth the effort to understand all the probabilities so that the best dice roll can be made, but it’s still a probabilistic thing.