Hey everyone,
I was hoping to hear from those of you who have been treated or know someone who has. Whom are currently the top neurosurgeons in Massachusetts?
There are several hospitals and a ton of neurosurgeons but I know only a handful specialize and have a lot of experience with brain AVMs.
Please share if you could.
Thanks!
Welcome to the site! I also had an AVM in my left temporal which i discovered in 2016 when it bleed. I was treated via gamma knife successfully. We do have some folks here from the Boston area so hope some chime in. You can use the magnifying glass in the op right to search as well. Take Care, John.
Hey,
Who did you go with for your GK? How big was it? What were the side effects and how long did it take to begin working?
What’s the end results? Is it completely obliterated? Do you now have to have surgery to remove it?
Hi Mike,
I’m going to be transferring my treatments from Lubbock to Boston, and it seems that the best neurosurgeons for an AVM are at Brigham and Women’s. I believe they have 4 AVM specialists there. You just need to make sure their treatment plan lines up with the treatment you’ve already received since they could disagree with the doctors you have currently and take a different course of action.
Bella
Which doctors have you chosen to see at Brigham’s? There are a number of cerebral neurosurgeons across Boston such as Beth Israel, Brigham’s, Mass General, Lahey, Boston Children’s.
Sounds like you did your research. Which neuros have you chosen to get opinions from.
I seen one neurosurgeon 15 years ago.
Mike,
Welcome to AVM survivors!
I had a bit of a poke around yesterday and the names I kept seeing in people’s posts were mostly Boston Children’s but I’ve heard Mass General mentioned before. A lot of people seem to have used Boston Children’s.
I’m from the UK, so can’t help directly; John is in Canada. Very international, you know!
Best wishes,
Richard
Do you recall which Dr. names were mentioned in Boston Children’s?
I feel like my AVM is a death sentence and once I begin treating it I’ll be paralyzed or lose vision etc. it’s quite depressing. Like others here, this is very depressing to find out one has an AVM. How grateful we ought to be for healthy conditions and how silly it is to complain about mundane things.
Mike, mine was dne by Dr. Kufmann in Winnipeg at the Health Science Centre. He is from year but worked for quite a while in Pittsburg. My AVM was small, bout 1 cm, left temporal. I had GK November 10th, 2016 and received the complete obliteration news February 2019. I had limited side effects, some swelling at 6 months but not to the point if needing meds. I had some ice pick head aches for a period of time that slowly went away. Other than that I was fortunate. John
Dr Ed Smith came up at least three times.
You’re right about these diagnoses, they come as a big shock. Like @JD12 I found mine, aged about 50, and it rocks your world. I can honestly say I never worried about my health all the way to 49. 50, OMG.
However, we’ve all been through that. I think reading about it, rationalising it and seeing that others have got through it well is key. It takes time to adjust to the shock. Just take your time.
Hi Bella,
Who will you be seeing at Brigham’s ? Who recommended them?
Hi JD,
How big was your AVM? How long did it take to get results? Mine is 3cmx3cm.
After your rupture, weren’t they nervous to just do gamma knife out of fear that it takes to long to get results?
Truly hoping others from Boston area chime in.
There has a been a change in plans so that I actually have to stay in Lubbock. However, there are several specialists on their AVM/Neuro page: https://www.brighamandwomens.org/neurosurgery/arteriovenous-malformations-treatment
Mine was about 1 cm. It was located on the inside of the temporal so the surgeon stated he would have to “mash through a lot of brain to get at it”. There was a fair void around it from the bleed and clot so he could be very liberal with the dose. I had a lot of things adding up to gamma knife success. But yes, the fear was re-bleed. We had discussed this and if there was a re-bleed we were going craniotomy right away. It certainly was a fear but waned as time passed. I think with gamma or any other similar the lag is certainly a cause of some stress! Take Care, John.
Any new or old members who have any information on Massachusetts neurosurgeons? Checking in to see if anyone new (or existing) to the group has had any experience with doctors.
Thanks in advance.
Dr. Ed Smith Children’s Hospital Boston
Does he work on adults and does he specialize in avms specifically?
If anyone is still looking for a neurosurgeon in Massachusetts, I had Bay Leslie-Mazwi at Mass General in Boston. (Everyone just calls him Dr. Bay.) He resolved my AVM that was behind my left orbit. He’s also the kindest doctor I’ve ever had (and there have been many).
Thanks for the post. How big was your avm? I don’t want to inundate you with questions on there but I do have a few. Do you happen to have fb?
Were you left with any deficits after the surgery? Im guessing your avm did not rupture? I looked at his profile a while back and it looks like he has done about 40 or so avm surgeries which made me a little weary. Not saying he isn’t great but that made me a little concerns for various avm types. Could you tell me a bit about your avm and your risks?
Thanks
My AVM bled a few years ago, which is how I learned I had one in the first place. (Although it took about 5 years from start to finish for a diagnosis.) Once I knew it was an AVM I saw Dr. Robert Starke at Jackson Memorial Hospital in Miami twice. He was fantastic and did two embolization procedures for me. My husband and I moved up north about 3 years ago and now live in Berkshire County. So Dr. Bay is my AVM doc now.
Dr. Bay did an embolization on me in 2019 and confirmed that the AVM has resolved. All of the issues that I have now existed before any embolization procedures.
My AVM was located behind my left eye. If the embolization was not successful, I would have needed a craniotomy most likely. I am disabled and have myasthenia gravis, fibromyalgia, CFS, chronic gastritis, IBS, anxiety, depression, panic disorder, among other things. My body is sort of a mess. haha. (In people with myasthenia gravis, anesthesia is a risk in general.)
My case is very complicated, as I assume any orbital AVM would be. I’m not sure how big it was, but here is a link to some animated gifs of the dye contrast to give you an idea.
Let me know if you have any more questions! (Sorry, no FB for me, just IG.)
HI Mike: I believe children only. He is at Children’s Hospital Boston. They may be able to give you a name of someone at MGH though.
We also consulted with Dr Solomon in NYC who was great and Dr. Lawton at Barrow in AZ.