Hi-
My name is Amy and I live in Connecticut. I am a 46 year old mom of 2, ages 14 and 9. I had a hemmoragic stroke in Feb 2020. Luckily the bleed stopped on it’s own. I lost all function of my left side but Am grateful that I have slowly regained it and you would never know by looking at me. I just had my third angio last week since the bleed and now they can clearly see an AVM which is toward the top of my brain so the vessels are very tiny. As such, “glue” is not an option. I’m meeting with a local neurosurgeon today to discuss options but as I understand it, only open and radio surgery are options, I’ll find out today which he recommends. How do I find the best of the best in New England?? I’d like to find a neurosurgeon with extensive experience with AVM’s. The AVF Is located at the back of the head and Was not part of the bleed, however, still requires attention after the AVM is treated. It is large enough to “glue”. Please help me find the best neurosurgeon in northeast or even on the east coast, there is so much info on line it’s hard to know what is valid data or just a doctor advertising himself. They recommend I get it treated quickly so time is of the essence. I am grateful to have found this community and welcome any info you have for me as I navigate this world.
Amy, I live in NYC and I had the best Neurosurgeon who saved my life. he performed the surgery thru my groin. I had an AVM Malformation of the Vein of Galen. His name is Dr. Athos Patselades and my brother in law who is one of the top heart surgeons checked out his credentials. i had dementia, lost my short term memory and was first diagnosed as a drug addict (never did drugs in my life)…I highly recommend, best hospital in this country.
Hi- thank you for your response. Sounds like he performed a “glue” type procedure? Glue will not work in my case because the veins are too small so unfortunately I’m a candidate for gamma knife surgery or open surgery
Amy
Amy,
Hi. There are three main ways of treatment --embolisation (= glue or other blocking material) stereotactic radiation (most often “gamma knife”) or craniotomy (= open surgery). Each has its role and, as you say, if the vessels are tiny, you can’t get a catheter to them to do embolisation, so a different mode needs to be used.
In the UK a neurosurgeon oversees all types of treatment but embolisation and radiotherapy would be undertaken by an interventional radiologist. In the US, it seems that embolisation is rarely used alone and a combination of embolisation and open surgery seems to be most often used, possibly by the neurosurgeon alone.
I hope you’ve had a good meeting with your neuro today. If we can help clarify any of the medical parlance, or what any of the treatments entail, let us know.
Very best wishes,
Richard
Hi Amy,
I cannot speak to anything related to Gamma Knife treatments, as I did not have this procedure. I did have both embolization and spinal surgery to resolve my spinal AVM. I can tell you that my team of doctors at NYU were phenomenal. Between Drs. Kister, Nelson, and Pacione (Neurologist, Interventional Radiologist, and Neurosurgeon), they rapidly diagnosed and treated my AVM. The post surgical care I received at the hospital was outstanding as well. I am sure you can find equivalent care at some of the other NYC hospitals, or hospitals in Boston.
One thing to keep in your consideration though, is proximity to those cities in relation to where you live in CT. At the time, I was living about two hours from NYC. My local doctors could not diagnose me and referred me to the city.
If you have been recommended to have a surgical procedure, there are some points you may want to keep in mind. Obviously, you want to seek the best care possible and as close you as possible. I offer the following for consideration: the travel requirements to the hospital you choose, where will your family stay while you are there (my wife spent two weeks in a hotel in the city to stay with me due to complications), length of time in post surgical care, special concerns or requirements about traveling home post surgery, where will you rehab (if needed).
Hopefully this provides some additional perspective in your search. Best wishes for your recovery.
Chris D
Thank you so much for the input Chris. I am so glad you found a phenomenal team. We are about 2 hours away from NYC. Right now considering Dr Solomon at NY Presbyterian/Columbia. I appreciate your note Because you gave me a lot to think about. I hadn’t thought of where I would rehab (if needed) or where my husband would stay. These are good questions I will think through.
Next step is my local dr wants a functional mri to more closely pinpoint where my movement areas are since my brain AVM is located near my left side movement and caused loss of function when it bled. I reached out to dr Solomon’s office today, hope to hear from them soon.
Best regards,
Amy
Hi Amy:
My name is Sharon and I live in Connecticut and I have an AVM. The AVM in my Cerebellum ruptured 5+ years ago. Due to it’s location, surgery was not an option. Gamma Knife Radiation was the only option available to me. As you know AVM’s require a lot of tests, doctors, scans, specialist, therapy, consultations and decisions. Circumstances led me to: Yale School of Medicine, Department of Neurology, Division of Vascular Neurology, in New Haven. My Neuro Surgeon is Dr. Gunnell. My Neurologist is Dr. Caitland Loomis, and Dr. Hebert, is the Neuro Radiologist that handled my Angiograms. All are located in the Yale New Haven Stroke Center, located at 800 Howard Ave., New Haven, Ct. 06510., Tele No. 203-737-1057.
I have no complaints with my team of doctors so I feel comfortable in recommending them to you. If you haven’t settled on a Neuro yet, give Yale a call. As you may know, they are considered top-notch in the field of medicine and research. At Yale, you don’t just get a doctor, you get a team. Even if you don’t choose Yale, please keep in touch. You are the only other CT AVM-er I’ve had contact with. Wishing you the best of luck.
Sharon D…
I would recommend NYC if you go can there. I second Athos Pasalides at Cornell Weill (NY Presbyterian). Personally I go to NYU Langone, which is also really exceptional. I’d say it’s well worth the drive.
Hi Sharon-
Thank you so much for your response. I have been working with a Yale neurosurgeon via St Francis hosptial as the hospitals have some type of relationship. I’m petrified and find myself wanting multiple opinions in order to find the best fit but I think I may just be confusing myself. Tomorrow I have a teleconference visit with Dr Solomon at NY Presbyterian/Columbia. I don’t know if we are allowed to connect via phone with this site but would you be interested in a short chat if we are?
@Amy.v and @Sharon_D I would encourage you to send a private message in order to share any personal information. You can do this by clicking on the person’s icon, and you’ll see a little envelope. Select that, and you can send a private message. Our goal is to keep you safe and your privacy intact.
Sharon from ModSupport
Hi Amy,
My AVM ruptured and I had emergency surgery when I was in NYC. I don’t know many neurosurgeons in the US because I live in Canada, but the few neurosurgeons I saw in New York at Mount Sinai Hospital, were really great. Dr. Mocco and Dr. Oxley were the two doctors I had, also their colleague Dr. Kellner.
They were all extremely nice, and very knowledgeable about AVMs. I received the best care at Mount Sinai West Neurosurgery.
Hope this helps,
Ella
@Amy.v Hello Amy Dr Michael Lawton is now in Arizona out of Barrow and they do remote consult - He is considered the best in the United States - He used to be in SF at UCSF and I would of had of him as my dr but I was already at Stanford due to massive rare stroke where I too lost all function of my left side - Then a few months later my avm a DAVF formed - I was already seeing the head of stroke and then was seeing the head of neuro radiology. But I have seen Dr Lawton surgery work - And if I needed open surgery he is the dr I would I go to.
Angela