Comment

Comment by Susan J. E on February 10, 2012 at 8:51am

I also had my AVM removed, I used to have severe headaches. Now I get mild headaches once in a while but if they aren't severe I don't think I would worry about to much. That's just my opinion, they could be related to allergys

Comment by KittiKar001 on February 6, 2012 at 11:31pm

Oh and MRI's cannot be done as I have alot of metal in my head.

Comment by KittiKar001 on February 6, 2012 at 11:30pm

In 1993 they did an angio which I call the "fire from hell". It was extremely painful and I literally saw flames and fire during the procedure and for 30 mins thereafter. It was inconclusive and they wanted to repeat it. My insurance changed and since then I have been told it is not necessary. I have no longer been seen by a neurologist except when my seizure become out of control, and then only once or twice is approved by my insurance. I do know they will approve whatever I need but the neurologists do not seem at all interested or concerned in a "cured situation".

Moderator Comment by Louisa on February 6, 2012 at 1:02pm

Hi, As Barbara & Trish said, if your AVM was totally removed, they don't grow back. However, I agree with Trish. Find a great neurologist in your area and ask if you should have at least an MRI, because of your headaches.

Moderator Comment by Trish on February 6, 2012 at 8:12am

Like Barbara said the only way they can "grow" back is if any of the AVM was missed during the treatment. It wouldn't hurt to see a neurologist and talk about your headaches and any other concerns. If you've not had a follow up angio or MRI perhaps it's time.

Moderator Comment by Barbara H. on February 6, 2012 at 2:10am

Usually as an adult they do not reoccur. However, if there is any remaining part of the AVM left...it can cause you problems. You may find this interesting...
http://www.avmsurvivors.org/forum/topics/reoccurance-of-avm?comment...
Did they do a follow up angiogram?