I’m new to the site and have found everyone’s posts extremely helpful. It feels good to know I’m not alone in this journey.
I have an AVM in my left knee that effects my knee and left. My AVM was diagnosed when I was 19. I went through 1 successful embolization and now vascular surgeons are suggesting me to take a risk of surgery so we can remove that AVM. Is it okay ?? to do a surgery or going through another embolization? I am confused .
Hi @iatharva28
Welcome to avmsurvivors!
When it comes to brain AVMs, surgery is certainly one of the viable routes to resolving an AVM. If your doctor is a practised AVM vascular surgeon, then their recommendation should be sound. Embolisation or sclerotherapy do seem to be the most frequent recommendations for extremity AVMs. It does seem rarer to me that doctors talk about excision.
I’ll just invite some of the @Extremity group in our community to share their personal experience and understanding of situations like yours.
The other route you might take would be to get a second opinion from another vascular expert.
Very best wishes,
Richard
@iatharva28 Hello I had my first embolism in 2012 and then they actually wanted to go back in soon after but I had a stroke and previously had a massive stroke to begin with so I felt my brain needed time to heal. Plus I am super allergic to the contrast.
So I waited until 2015 for my next Angio and embolism .
They were not able to get everything as it could possibly paralyze me again so we just wait .
You could send your scans to Barrow in Arizona which is the number one place in the USA for a second opinion.
Dr Michael Lawton is the number Dr for AVMs and since my Stanford dr has retired if I do need another embolism I will be either flying or driving to see him.
I have seen his craniotomies and he does excellent work.
Welcome to the group!
Angela
Hi and welcome to the forum!
I have an AVM in my foot and underwent 1 embolisation. Unfortunately for me I also developed CRPS (which is something you don’t want to get), and thus flared up after the procedure.
I personally have been advised that any surgery around the area would make my condition worse.
However from what I have read and seen on the forum, it often takes several goes with embolisation to sort out an AVM. I think it is worth investigating more what the pros and cons of this surgery would be and the likelihood of success.
I would also say try embolisation again if your specialist recommends it, as it does take several goes sometimes.
Good luck and hope that helps!
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Hello and welcome. This is a great site for help in making AVM decisions. There are so many agonizing decisions with this disease. The support you’ll get here will point you in the right direction to the source of great info. Best wishes, Greg
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Hi! Ultimately, it is your decision and whether it is right or wrong, depends very much on your individual circumstances and also your team. Excision is not a usual route but I recently heard of somebody who had their pelvic avm removed successfully in the States, which is pretty incredible. I would suggest that you go on the extremety avm site on facebook as there are lots of people there with avm in their knee. They will be able to give you feedback on their experience. Some of them may have even been patients of your doctor? Then you can make a more informed decision. Good luck!
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I am a brain AVM guy, so quite different but we do share some similarities for sure. The treatment decision that most of us encounter, the options to consider. For me personally, I was very comfortable with my neurosurgery team, and felt they were straight forward on the risks which ultimately led me to gamma knife. There was a lot to consider, and for me personally it was being at peace with the decision I made. Knowing if it was the right decision or not often comes after the fact, but the comfort in the process was vital for me. Take Care, John.
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Hi,
I’ve had 16/17 embolisations on my AVM in my left elbow. Recently I had another MRI scan in London and there was talk of completely removing the AVM but this was because they were discussing a potentially different diagnosis of a nerve sheath tumour (imagine my surprise!). The plan however is to have another embolisation and if the AVM doesn’t look like an AVM during surgery they will remove/biopsy… But just to clarify, he wouldn’t recommend fully removing if it is an AVM which now they think it is again… I would get a second opinion if thats an option 
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