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AVM Survivors Network

Recovery after open brain surgery for DAVF


#1

Hi all,

I haven’t posted in a while, and I could use your help with some of my questions. I previously had a DAVF in my occipital lobe that is now cured. I also have 3 DAVFs in my frontal lobe. We initially thought these could be treated only with Gamma Knife, as they have Pial involvement and possibly drain into my brain. After a second opinion at Barrow in Phoenix it is now being recommended that I have an embo of these fistulas followed by open brain surgery the next day. The surgeon recommends open surgery as opposed to radiation due to a bleed rate of about 15% per year. He thinks I don’t have enough time to wait the 2-3 years for the radiation to work. This MD is considered one of the best in the world for AVMs, and though I trust his opinion, I am absolutely terrified about the recovery process and possible deficits after surgery. Would any of you please describe your own recoveries after open surgery? My surgery is schedule for two weeks from today.


#2

I’m sorry I can’t answer your question about experiences of open surgery (I’m currently untreated) but I was wondering whether he means 15 % chance of a bleed per year as in, year 1 = 15 % year 2 = 30% etc ? Or whether it is 15 % each year. I have read statistics like this before and I assumed it went up each year, as opposed to the latter? But then someone told me I was wrong as the longer it hasn’t bled, the less chance it will, but that makes no sense to me, I presume the risk goes UP each year.

I hope it goes well. I hope someone else can answer your question for you. The surgeon himself should tell you how his previous patients are doing following open surgery for Davf. I know it’s very scary. I’m in the process myself of deciding what to do and I’m terrified


#3

Wales, Thank for your response. Each of my 3 DAVFs has a bleed rate of 15% per year and about a 10% mortality rate per bleed. Per my knowledge the bleed rate only goes up if there has been a previous bleed or change in imaging. My DAVFs have cortical reflux, which makes them higher risk.


#4

@Kgrossenbach Hello- I am glad you got a second opinion by Barrow. Is Dr Lawton? If so I would believe him. I have seen his work and spoken to a few people who have had their avms treated by him. My Ent dr is good friends with him and the only reason I did not see him for my avm/davf is I was already at Stanford seeing the head of stroke and seeing the head and founder of neuro radiology.
When I did see Dr Lawtons work I was there as support for someone who had open brain surgery and they had no pain. It is pretty amazing that they can remove your skull and put it back.
When I was talking to my dr Dr Marks at Stanford and asked how they decide on what treatment plan he said it was by experience. He said at Stanford they only see about 12 DAVF a year and I know people come from all over the US.
So you want someone who is older and experienced. Dr Lawton is the best.
Obviously there is a lot of important stuff in our frontal lobe and that is probably why he doesnt want to risk waiting 2-3 years for gamma knife to work.

I know my DAVF grew pretty quickly I had 30 feeders. I knew when my vein blew out which was June of 2011 and we found it in Nov of 2011 and my first embolism Jan 2012.
Hugs
Angela
@monica3 Can you chime in?


#5

Thanks for your response. I spoke with Dr Lawton by phone again today, and I am confident that he is the best person to handle my issues. I will continue to update after my surgery.


#6

Also, FYI, my DAVF also involves the Pia Mater and drains into the brain, which he said is very rare.


#7

Lots of really good reports on Dr Lawton on here, he certainly is a great person to have handling it. I really look forward to the updates, thoughts will be with you. Take Care, John.