So they came back and said I didn't not have an AVM, but an abnormally dilated vessel that should be absolutely fine. He said it should be nothing that ever gives me problems, but when I look at the picture they gave me, it looks awfully large to think it has no impact on what I've been going through (dizziness, fatigue, mental cloudiness, decreased focus). His answer "Not really my concern, you can follow up with the neurologist who referred you"
So there is still something there, he's intimating that it's nothing to be concerned about, and I'm left in a tailspin! He said this vessel was located behind my right eye, but the MRI showed whatever was there seemed to be practically wrapped around the brainstem. Things don't seem to be adding up to me. :/
No that doesn’t seem right. I have been going through run around with doctors ever since they found my A.V.M. Which was on January 4th and i had Gamma Knife treatment the 24th of January. I have had a lot of problems with my doctors and i didn’t know what to do. So i asked around on here and others have told me to get a new doctor and even second his opinion with another doctor just to make sure what he is telling me is correct so i suggest you do that. Especially if there is something wrapped around your brain stem that is a very extreme place to have it. Mine is in my frontal left lobe… But i have the same problems you do and then some. lol If you need anything i am here… just as someone to talkt o. I don’t know very much about any of this. But i will try my best to answer any questions to the best of my knowledge. I hope everything goes well for you!!
Jennifer, I have to agree with what the others have said - I would get another opinion on it. I do hope you have better luck where you live, than I do. Most of the nueros in my area are completely dumb when it comes to avms. The other option might be to have your records sent to a more knowlegable hospita/doctor and get there input on it. If you send them yourself, you can attach a letter explaining all of the symptoms you are having. Or… perhaps call them and talk to someone.
HI, HERE COMES ANOTHER ONE YES I AGREE WITH THE REST, WHEN YOU GOT YOUR MRI WHAT DID THE NEROSU SAY HE SAW, I WAS READIN WHAT HE SAID ABOUT NEUROLOGIST, HAVE YOU SEEN A NEUROSURGERON, HE IS THE ONE THAT WOULD DO THE SURGERY, THE NEUROLOGIST IS THE ONE YOU GO TO AFTER THE SURGERY IF YOU ARE HAVIN ANY TROUBLE THAT HE CANT HANDLE, YES DO GO SEE ANOTHER DOC, SOMETHING DOESNT SOUND RIGHT TO ME EITHER SOMETHING THAT CLOSE TO YOUR BRAINSTEM. ONE THING MY DOC TOLD ME WHEN I FIRST STARTED GOIN TO HIM SOME DOCTORS DONT LIKE TO HANDLE AVM CAUSE THEY HAVENT HAD ENOUGH EXPERIENCE WORKIN WITH THEM MEANIN TAKIN THEM OUT. I HAVE ONE OF THE BEST IN THE USA WOULDNT USE ANYONE ELSE. KEEP US POSTED AND YES DO GO SEE ANOTHER DOC. MY DOC DID MY ANGIO. KEEP THE FAITH STAY PRAYFUL GOD BLESS WILL BE CHECKIN ON YOU
I whole-heartedly agree with everyone one else and URGE you to get another opinion from a neurologist or neurosurgeon who is familiar with AVMs!!! (AVMs & other ‘vascular abnormalities’ are rare and not something that just ‘any’ neuro doc (neurolgist or neurosurgeon) can ‘handle’, so it is IMPERATIVE (to YOU & YOUR health) that you get a neuro doctor that is knowledgable & skillful in AVMS!) Good luck!