Horrible After-care

General
1

I had an AVM bleed followed by a craniotomy back in November…I had an excellent surgeon, but all of my follow-up visits are extremely frustrating…He says I don’t know to answer all my questions…I have had a headache for seven months and he is no help and I have many other unanswered questions. Does anyone know any good doctors in the NY area who are good at answering questions? Would I be better off going to a neurologist instead of a neurosurgeon…he recommended I see a headache doctor but could not refer me to anyone.

2

Our experience is the neurosurgeons know how to cut, that’s their specialty. If you want to know about medications and such, we see our neurologist.

I’d suggest you have your neurosurgeon recommend a good neurologist for you to see, if you don’t have one already.

Hope this helps.
Ron, KS

3

I agree with Ron, each doctor looks at a very small piece of the puzzle. They don’t look at the whole person and all the ways this affects them. We see both as well.

4

Hi Mary Kate,

I did a Google search of “neurologists avm new york city” and got names of several places and doctors that possibly could help. Among those was the Neurological Institute at Columbia University. You might want to try the same search and see if there’s anyone who you think can help you. Good luck with this.

Take care,

Debbie

5

Thanks everyone…gonna look for a neurologist

6

If you do not like the first neurologist it’s ok. I visted 5 before I found the right one.

7

I am also still having headaches after my craniotomy which was 6 months ago. My neurosurgeon said it would take up to a year to be completely healed so I think it is to be expected to still have some headaches. However, I am glad to hear you are going to see a neurologist in case something else is going on besides normal healing from the surgery. I see a neurologist for other issues, as well. About a month ago, my headaches were really bad and we thought something might be wrong. My neurosurgeon ordered another MRI to check things out and everything came back clear. That really gave me some peace of mind and I could relax a bit. Since then the headaches are getting a little better. I pray you find someone to help you and you start having some relief soon!