AVM removed 6 years ago, and symptoms come back

Hey All,

I had an AVM in the left occipital parietal lobe of my brain removed in February of 2008. My main symptoms was a persistent headache. It never went away. Even with extremely heavy doses of morphine, I was in constant debilitating pain. The headaches mainly just felt like my brain was so full, it was going to explode at any moment along with a V shape stabbing pain. Now, 6 years later, these headaches have returned. I have been experiencing them for almost 3 weeks now. I saw my DR yesterday and he gave me T2's which once again, did NOTHING. I have a CT scan booked for tomorrow morning.

In my head, I'm telling myself "It's nothing. Don't go to worst case scenario" but in my heart, its getting harder and harder to believe that. I have started to become slightly nauseous, and experiencing dizziness and vision changes (all like the first time).

Has anyone else experienced symptoms coming back that turned out to be nothing?

I just don't know how I would go through that again...it has taken me this many years just to come to the acceptance with my experience and disabilities I now have because of the resection of the AVM.

Shelby, it is natural that you would post these questions, but I think it is best if we hold off on feedback until you have had the scan. Try not to forecast. Just deal with the now. Have the CT, learn the results, and then you can figure out the next step. What other people have experienced will not change what will or won't show up on your CT. Wishing you a clear scan, and please keep us posted.

Shelby, my AVM was in the same place as yours, only opposite side. I'm almost 7 years post bleed/crani. A few years ago I started experiencing new, weirid symptoms also. More dizziness, vision changes, etc. My neurologist thought it may have been a type of seizure so I had an EEG test (I thik that's the correct test, memory foggy) That test turned up negative as did the contrast MRI the doctor ordered. He did another series of blood tests and finally came to the conclusion that he had no idea what was causing the new symptoms. He said it just may be what I may deal with for the rest of my life. In your case it may or may not be anything. Try not to focus on the what ifs until you know for sure what "it" is or isn't. Let us know and good luck to you.

Shelby, Please let us know the results of your CT Scan. Since my final angiogram 5 years ago which determinate I was AVM Free and although I've had different symptoms since, I haven't had any other testing. So I would be interested in the results of your CT Scan.

Hi All,

the update is that i had a contrast CT and it came out CLEAN! what a relief. I am still dealing with the pain which is unfortunate but at least I can not go to 'worst case scenario' thinking. I am going see a neurologist. Hopefully they will have some insight.

My new conclusion is that this may be something that just happens whenever I get too overworked. My brain and body telling me I need to slow down

thank you for your support xo

That is very good news about the scan, Shelby. You may wish to join the Coping with Headaches and Mindfulness groups for ideas about how to help with the pain.

Its been nearly 4 years for me and I came across the same thing and still feel this way right now...all tests have come back okay and one Dr mentioned he thought it was stress related and general pressures of work, family etc etc...glad your okay and like Trish I also had so many new tests done and everything was fine thank God...I would rather it be stress etc than anything else as I feel we have all endured enough for a life time of suffer with AVM's ...God bless!