Neurologist Troubles

It seems that my neurologist knows a lot about epilepsy but nothing about AVM. I feel like I am educating her most of the time. Everyone has to learn somewhere but this is adding to my stress. AVM only effects about 1% of the population so I can understand that not every doctor is going to be an expert but I feel like there should be a feeling of security between us and our care providers that is missing. The neurosurgeon has lots of experience and knowledge but unloaded me to neurology and doesn’t want anything to do with me except for at the 6 month mark.

Does anyone else feel this way? Is or has anyone else been bogged down feeling like you are alone to seek your own answers?

Hi Holly. Boston Mass General has a ton of experience in AVMs. I would call their neurology department and ask if they know of any neurologist who specialize in AVMs. You do not want to be a guinea pig. Good Luck!

Thank you. I will look into that. I do not have insurance and get reduced care through Tufts. I will probably have to apply for something similar to be seen at Boston Mass General. Might be worthwhile by the sounds of it. Did you see someone at Mass General in particular?

I have a good friend on here who did. I will contact her for you.

I can so unfortunately relate to your frustration! :0
If you live near a medical teaching university, I’d encourage you to try there.
I’ve been on my ‘soapbox’ with this topic many times & have written to as many medical assoc. & neuro depts. @ universities re: the NEED for more education on AVM’s & CM’s…
The lack of knowledge in rural medical communities re: ‘us’ is incredible & often you just gotta keep searching.
It’s EXHAUSTING, but hang in there friend! :slight_smile:

Thanks Patti. Tufts is actually supposed to be one of the best and yes a teaching university. I felt in good hands with the surgeon but once I left him I feel like I was thrown into the abyss. I am sure you understand. You are a great source of information and inspiration Patti! Thank you for sharing your journey and helping all of us! <3

Hi Holly…I was treated and had my cran at MGH. So I asked a friend at MGH to tell who the best AVM neuro doc is at MGH. Will let you know when I get an answer. I’m going to see a neuro doc that specializes in epilepsy here in RI next week and if I don’t like her…I’ll be straight back to MGH. The only reason I don’t go straight back to MGH is that I have to ask someone to drive me to Boston. However, if I don’t find a good doc here in RI, I will find someone to drive me up to MGH.

I’m a little closer to Boston but getting rides is tough for me too. I really appreciate the info. I hope you are able to find someone closer to home but I know for me my local hospital’s neurologist very honestly told me he was not familiar enough to help me. I respect him for that rather than feeling like a guinea pig!

Holly…please find a way to go to MGH…they are the best in our area…and you deserve the best!

Yes something like that happen to my too. When I was in the ER they give an adreess to follow up with the neurologist and he said that his gonna send me to alburquerque. at (UNM)…I ask him why, I work on a medical field before an I know only patients that real sick they get send over there…I ask him why you are sending me over there…He said because he wasn’t to familiar with AVM…Wish it was good at list he was honest with me seems like AVM is only for neurologist who is specialist on this…Good luck my friend…With you new JOURNEY…