Treatment questions

I’ve seen an orthopedic oncologist in Ft Worth (finally!) that recommended surgery as treatment for my AVM but I have 2 very small children at home so she advised waiting until they’re older due to recovery. She said my AVM is very large involving nerve/muscle in my arm with some calcifications. She wants me to manage with a compression sleeve along with seeing a pain management dr for now or until it is absolutely unbearable. She also said that she thinks I have a very high probability of it returning after treatment. She didn’t offer radiation or embolization as a treatment…is this the norm to go straight to surgical removing?? I’ve called Dr Yakes office to get his opinion but my insurance expires at the end of the month so I have to figure that out first before I can send my stuff there & see him.

Miranda, I am thinking (actually, I am knowing) that you should get a second and a third opinion from doctors very experienced with vascular anomalies before even considering this surgery. I have not heard of an orthopedic oncologist being a go-to doctor for an arm avm before. Removal can take away vital tissues and can leave you with a bigger and more complex avm post-surgery. I suggest you begin by contacting Dr. Rosen via the Vascular Birthmark Foundation website to ask for an opinion. I want the very best outcome for you.

My dr referred me to her because the vascular dr said he couldn’t do anything. I haven’t heard of Dr Rosen or Vascular Birthmark Foundation. Do they handle AVMs? I’ve read several sources saying Dr Yakes is one of the best?? I’m def going to get a 2nd opinion tho because I thought jumping straight to surgery was odd.

Dr. Rosen is the VBF expert for arm and leg avms. He has many patients here, as does Dr. Yakes. There are a good number of other talented interventional radiologists, but these two are most often recommended. They would both be a good place to start. They have different approaches.

Ok thanks for the info! Where is Rosen based out of??

Lenox Hill, NY

I talked to Dr. Yakes ofice a few times several years ago about treatment for my ear, scalp, salivary gland AVM. He uses alcohol to embolize and for me at least it would have meant MONTHLY embolizations for 2 years or more. I couldn't financially or emotionally handle that lengthy, monthly treatment so I went elsewhere. I agree with Dancermom, please take the time to consult with several AVM specialists who work with people with AVMs almost exclusively and have years of experience. An orthopedic oncologist does not an AVM specialist make. I had a horrible experience with a neuro-interventional radiologist who claimed to be an AVM expert but wasn't and I was forced to get treatment with him because my insurance was running out. Don't be pressured into anything because your current insurance is running out. It isn't worth it. Get several consults with the AVM specialists mentioned on this site and then you will be able to make the best decisions.