7 years ago I had my AVM rupture. While they were waiting for the blood to absorb so I could get my GammaKnife surgery, 3 weeks after the first bleed, it bled a second time and I was in critical condition and was in a wheel chair for 2 months. Surgery was done a few months later and a follow up angiogram a year after the surgery. They said everything was fine. I had headaches for a year after the surgery but they said that was normal and they went away. Now, the headaches are returning. I went for CT scans, MRI’s and scans with contrast and they detected nothing. Even went to check my eyes to see if that may be the problem but nothing came up. The doctors dismissed them as migraines but the pulsating short pains remind me so much of the pain felt immediately after surgery. What should I do?
Hi Briana,
Obviously if your doctor is dismissing these headaches as “migranes” despite you telling him what you think it feels like, it sounds like you need a second opinion. As was mentioned here, you have to both like and trust your doctor immensely before undertaking your journey. Given the rare nature of AVMs, most doctors are just know learning about this and know very little. Please understand that I’m not saying that this is the case with your doctor. It certainly might not be. But generally speaking, this is true. Don’t be afraid to ask these questions or even ask for a second opinion. You can certainly ask us here for similar experiences but as you well know, every AVM is unique. Perhaps a member in your area can recommend a doctor who specializes in AVMs to get a second opinion. Best of luck to you.
I agree with Suzy: consider getting a second opinion, since your doctor’s assessment doesn’t match your own feeling about what’s going on. It sounds like the doctors were very thorough with the tests they ran, but I understand your doubts. A second opinion should come from someone who you believe you can trust, so you could start by doing a little internet research to see who handles a lot of AVMs and is part of a good neuro department (so they can refer you to a colleague if needed). Your profile says you’re in NJ, so I suggest including Alejandro Berenstein in NYC or Robert Rosenwasser in Philadelphia in your search. They’re both top AVM docs working in excellent neuro departments.
Whatever is causing the headaches, a good neuro team should be able to work together to find some way of treating them or limiting the pain they cause you.
funny you mentioned rosenwasser!! he did my brain surgery! small world!
Many members here suffer from migraines…
http://www.avmsurvivors.org/main/search/search?q=Migraines
I just flew with a woman who swears by the migraine diet.
http://www.webmd.com/migraines-headaches/guide/food-related-headaches
It is a huge lifestyle change and of course you should talk to your neurologist about it.
Briana, after reading your message I was shocked to hear that you had a second bleed. My wife had her bleed last year along with a endovascular surgery with the glue. On the second bleed what symptoms did you have? What side of the brain was it and how big? My wife;'s was 4mmleft side. She is so afraid of having another bleed. She had a Gamma Knife treatment and had lot of tingling and weakness in her right arm and hand.
She had her year followup and so far doing okay but lots of minor headaches.
What medications are you taking? We would like to stay on Vimpat alone and get off the Keppra.
Andy
I had my avm crainitomy in 2004. About 2 years ago I started getting migraines again. After extensive tests, my neurologyst says it is common after crainiotomies to have migraines. So if there is no bleed, don't get too worried, though the migraines are no fun at all.