We are AVM survivors, here for your support.
Looking for good neurologist with AVM experience
In any case our primary physician believes this stuff is very likely related to the AVM or the treatment of the AVM. She has suggesting looking for a neurologist with post AVM experience, as that person may have seen something like this. She also suggested that I get back in touch with the hospital that did the gamma knife and ask them if they've seen anything like this.
So, if any of you have a neurologist with AVM experience, please let me know. We live in Gaithersburg MD and can easily get to Baltimore or Washington DC. I would even try Philadelphia if it was someone with good expertise in this sub specialization.
Aside from the numbness, Katie experiences a certain degree of light-headedness, periodic bouts of breathlessness, and the always present memory problems.
Thanks!
Replies to This Discussion
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Permalink Reply by Leslye Wilson on -
Hi Diane. You can try my neurologist, Dr. Simard of the University of Maryland Medical Center in Baltimore. His office number is 410-328-0850. I've seen him and followed up with him after my Gamma Knife, and after my AVM has been declared as obliterated. He'll listen to what you have to tell him, and he'll help in whichever way he can. If he cannot help you himself, he will refer you to someone who can. I hope this helps. Best of luck to you and your daughter.
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Permalink Reply by Joanna on -
Hi Diane, I'd recommend Dr. Lunsford at the University of Pittsburgh Medical Center. He's been involved in AVM treatment since the 80s (I think) and trained many of the surgeons in the field today (at least three I've met). He has a steady bedside manner which helped me trust him despite being a young and fairly scared patient. I also strongly recommend Dr. Thompson at the University of Michigan, though it's further away--he's one of Dr. Lunsford's former students--and he is incredibly warm and kind, not only with patients, but extended family. My mom and I both really like him.
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