Hello, My daughter is 18 .. Her AVM ruptured 3 months ago and she is currently going thru the recovery process/therapy.. As parents we are evaluating options for her treatment and prevent any recurrence. We have heard from our doctors that Gamma Knife is a non invasive option and can help make the AVM go away in 3-5 years and we have opinion from Barrows to go for Surgery (which we are scared about). Which way should we go?
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Welcome, and I hope we are able to help. The decision on treatment options is extremely difficult. I always say that one needs to have complete trust in the Dr. and be at peace with the decision. I opted for gamma knife as it presented far less risk for me due to location. My AVM was on the inner lobe of the left temporal. My surgeon felt that accessing the AVM presented a high risk of deficits. While my AVM was cleared in a couple years via gamma, the risk of a second bleed existed. I would certainly seek opinions and I do know that Barrows is extremely highly regarded and many folks here have been treated there. Sometimes we won’t know the right decision until after the treatment, I was 27 months realizing the well thought out decision which I was at peace with was the right one for me. Hopefully not too confusing, but it is all up to the individual. Take Care, and my best to your daughter and you, John.
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It’s extremely difficult for anyone here to offer their opinion on the best option for your daughter… ultimately it will be a decision she will need to make with the family… as someone who suffered a bleed a month after being diagnosed, I had no option but to undergo surgery for removal… difficult but I got through it and here to share my story and how I would have never done it any other way… but I had no choice, which was bitter sweet.
Maybe get another opinion to see where the third option sits at and then consider the options… God bless!
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Hi first of all I am so sorry your daughter and your family are going through this. My son was diagnosed with a frontal lobe AVM 3.2 mm at 13 .my sons AVM had not ruptured. The last thing you want to hear is that your child needs brain surgery. We got opinions on gamma knife and craniotomy, open brain surgery. Ultimately after speaking with experts at Mayo and Mpls Children’s with much prayer and consideration we choose what is considered “the gold standard” (if possible) craniotomy. Of course every AVM is unique and sometimes crainiotomy is not an option. At the 6 month check up we found his AVM had regrown. At this point he was monitored with annual angiograms for 5 yrs. After 5 yrs his AVM had grown just over the size of his original AVM. I had done some research and knew Dr Spetzler was the chief neuro surgeon at Barrow Nuerological Institute in Phoenix. He and Dr Martin created the Spetzler Martin scale that grades the AVM. Dr Spetzler recommended crainiotomy vs Gamma knife and again said it was gold standard. My son had his second surgery at Barrow by Dr Spetzler. Who has since retired. My son is doing well and now in Medical school interested in nuerosurgery. Dr Lawton is now the chief neurosurgeon at Barrow. After my experience the things that were important for my family to consider were the experience of the doctor; do they specialize in AVMs ? how many AVM surgeries do they do a year? Financially can you afford to travel for the surgery? Prayerfully does God give you peace with this decision? For the first surgery we choose to do it at Mpls Childres close to home. For the 2nd surgery we choose Dr Spetzler at Bartow for his expertise and peace we felt. None of the decisions are fun to make. Praying for you and your family as you go through this.
As the previous posters have said, we can not give an opinion as we are not medical professionals AND every AVM is different - size, location etc.
If you have been given different treatment options, I would each doctor ask why they feel it’s the best option.
My daughter was treated in different hospitals and some openly said they did not have the experience therefore suggested another treatment.In her case GK was not an option because of the high risk of rupture.
Understandable you are scared about surgery - as was I - but our surgeon assured us that the craniotomy would be a walk in the park for her compared to the rupture she suffered. He was right.
Take care
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Hello
I’m from UK and had a rupture in 1990. About 5 months later I was deemed fit enough to have surgery. I essentially had to trust an amazing team and I’m over 50 years old now. Surgery was unpleasant and left a big scar and even now it’s still very tender to touch.
Would I have been better with a laser? Who knows ? Back then it was still experimental so it might not have been successful. Would the laser have zapped another part of my brain and caused a problem?
I think you have to decide on trusting your doctors or not. Certainly it was the quickest treatment for me and thankfully has been successful from the point of view of not re-bleeding. Ask your team why they prefer the surgery option, how many successful operations they have done, how will it affect the current recovery process
Good luck
Tim
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Of course the decision is yours, but I had the Gamma Knife at age 10 and again at age 16… only for the AVM to grow back and bleed again at age 23. I don’t know if other surgeries would reduce the risk of regrowth, but I was told that because of my age, the AVM grew back during puberty. I am currently waiting to see if my third Gamma Knife treatment was (finally) successful. So it might be worth discussing with her team about risks of it growing back because she is so young. Wishing you all the best!
-Julia
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Like Rachel, I am here in Minnesota, and had a AVM craniotomy and resection at U of Mn Fairview hospitals. Our closeness to the Mayo clinic means we have some stellar docs here. In all honesty, I was told that depending on the placement of an AVM, that craniotomy was much better than gamma knife radiation because theres lesser risk of regrowth but also less scar tissue build up from radiation (radiated tissue dies and makes necrotic tissue. It can leave scar tissue that contributes to seizures later. It’s rarely mentioned, and should be read up on.) There has been a recent study that craniotomy is the best way to deal with AVMs. BUT…
Some things your Doc should discuss with you is the placement- ie how deep is it? Which hemisphere of the brain is it located? What areas would be affected like sight, learning, speech, cognitive, hearing, balance? What deficits, if any, could develop from surgery, or developmentally? Tim brought up good point also- why does Barrow suggest craniotomy over gamma knife?
Its alot to take in, its a fast learning curve, and let me offer you all my support and love- no one wants to hear the words ‘brain surgery’ in their lifetimes, for themselves or a loved one. And it’s a club that could do with a lot less members!
Big Hugs, Kate.
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