Does anyone know of any possible new treatments that are being developed for AVMs that we might see as an option in our life time? I get embolizations and they are too hard on my body and I’m really looking for a glimmer of hope that one day there might be a better way to deal with this disease.
Our foundation has been raising money to find a safer treatment! We have been able to give over $720,000 to Dr. Roc Chen’s AVM study and he is the first person in the WORLD to successfully make a TRUE AVM in a mouse model. We are hopefully going to start a clinical trial soon to see if the treatment he has been testing on the mice will work. I’m so sorry you are having to deal with this. My son had a grade 4 AVM in his brain and has been through living hell. Hugs and prayers. Here is his story if you’re interested.
Could I ask where do you go now for your treatments and the doctors name? I live in Ga and go to Denver for my embolization.
I go to Vanderbilt in Nashville and my doctor’s name is Dr.Baron.
Thanks for the info. Its interesting that my primary doctor called Vanderbilt and they stated there wasn’t a doctor to treat me. Could I ask what type of embolization you are having? I have had 30 ethanol and 1 onyx. I looked up Dr Baron and it states he is a pediatric doctor.
Hm I’m not sure why they told you that. Technically he is a pediatric doctor and since I’m only 20 they treat me at the children’s hospital but they said once I reach a certain age they will have me start going to the adult hospital and just have doctor baron come over there to do my surgeries(the children’s and adult hospital are like 8 minutes apart). I’m not sure what they use every time for my embolizations but I know In the past they said they have used a mixture of onyx glue, azure coils, and amplatzer plugs, and alcohol. And during my most recent embolization I believe they said they did a combination of sclerotherapy as well.
I will say if you are looking for a different doctor to receive treatment from for whatever the reason, I would definently reccomend Dr.Baron he is very sweet and is one of the only doctors I’ve met that will actually listen to what you have to say and your concerns and do his best to make sure you understand anything you are asking about. And I had Dr.Rosen in New York who is supposed to be the best doctor there is to treat AVMs, (he’s been treating them for a few decades now and Vanderbilt actually uses his coils)anyways I had him give me a second opinion and he took a look at all my scans and what not since they’ve been treating me and he said Dr.Baron did a very sophisticated job and that he wouldn’t have done much differently if he were the one treating me. On a side note, where is your AVM located because idk for sure if Dr.Baron treats brain AVMs?
My AVM is in my left leg from toes to thigh. I am in my 50’s and actually had it removed twice in the 1978 and 1980. Definitely isn’t the treatment for a AVM but that is what the doctors did back then. I had a pregnancy in 96’ and have issues ever since. I started having knee issues and discovered my AVM has grown into my bone and joint. I have been seeing Dr. Yakes since 1998 with some time off and recently started back with embolizations.
You are incredibly strong for being able to deal with that. I can’t imagine having an AVM that severe, and I’ve been told mine is the worst my doctor has ever seen lol, imagine if he saw yours. Well if you are looking for a second opinion definitely would recommend giving him a shout. Best of luck
Happy anniversary @moonglow500!
You joined 1 year ago today, hence the little cake next to your avatar!