Ok, my avm is righ frontal and parietal lobes and I have suffered from migraines and have been able to cut back on them since I have been on Nuerontin, which I hate because it has caused me to gain weight. But the pains that I have in my head are becoming different. I feel a pressure, like my head is going to explode, that is accompanied by the sharp pains and tenderness to my head. I am also having issues w/ dizziness because when I have this pressure then my eyes can't focus. My blood pressure is fine, I've been to the ENT Dr and everything is fine there as well. Any advice? My avm is small and due to the location of it, the dr said it's best to just watch it instead of any other treatment due to the danger of it. I would also like to see another Dr but then I have to go through all the tests again. Frustrated and hurting!
With any new symptoms, or changes, it's very important to contact your neurologist, or go to the E.R. for an exam & possible scan.
Have you considered sending copies of your medical records & MRI/CT scans to AVM experts http://www.avmsurvivors.org/forum/topics/top-neurosurgeon-in-the-us?xg_source=activity for a 2nd, 3rd, etc. opinion? Getting another opinion(s) is always an option.
I hope you find answers & a solution.
My AVM was in the same location, they said between the "flaps" of the right frontal and parietal lobes. It ruptured during my second pregnancy and I am now hemiparetic. I would take Patti's advice and travel to a neurologist or neurosurgeon or anyone who has extensive experience in dealing with avms, more specifically of the cerebal variety. Sometimes it is best to just leave it alone, you might live the rest of your life without intrusion from this "time bomb" especially if it is so small. But it is also best to do your own research, delve into the backgrounds of other options such as gamma knife surgery or stereotactic radiosurgery, embolization, and craniotomy (hopefully you won't need to go that far). You're experiencing symptoms of something going on and if it's enough to worry you then it's enough to venture outside of an ENT visit and expand your options of treatments. Pain is never fun....good luck.