My husband has an AVM (about 3 cm) in his left occipital lobe. He had a bad headache and partial loss of vision that led to an MRI scan, which revealed the AVM. He is 35 years old and has been in good health overall. After two episodes of headache and partial loss of vision, he has been fine, except for minor headaches. His vision is normal too… he can see fine now.
Our doctor has asked him to get an angiogram and a visual field test. He suggested a gamma knife procedure too.
Can anyone please share their experience? Is he going to come out of this ok? Will he lose his vision? What are some things that might happen? I will really appreciate any help and suggestions. Thanks.
The doctor will have a better idea of how to treat the AVM after the angiogram. Prior to my angio, it seemed that surgery might be the best option for me, but after the angio, my surgeon recommended Gamma Knife. Due to size & location, I would have a far higher chance of vision & motor skill deficits after surgery than of having a rupture while waiting for GK to shrink the AVM. I have had round one of GK (next round is in 3 weeks) and have had a craniotomy to clip two aneurysms. Thankfully, I have had no deficits. Still getting migraine aura,though--just not always with the headache afterwards.
Compared to a craniotomy, GK is a piece of cake. For me, the worst parts of GK day were having the halo attached & removed and the lying flat for 6 hours after the angiogram. And I was really cranky from having to get up so early, not get my morning mocha & not being able to eat until after my turn in the GK machine. There were 4 of us that day & they put me in last since I had the most complicated procedure for the day.
Ihad my first angiogram on a Friday & was back at work on Monday. I had difficulty walking for a week or so--the incision in the femoral artery just caught a muscle in a funny spot & I had trouble walking as quickly as usualy or taking as long of a stride as usual. The angio for GK day didn't affect me the same way & I was walking normally in a couple of days.
I had GK a few days after school let out for the summer in June, but I was at Summer Professional Development the following week & felt fine.
After the craniotomy, I was very weak and had major headaches for 2-3 weeks. I returned to dance classes 4 weeks afterwards & went back to work 7 weeks after surgery when teachers returned for inservice days to prep for the new school year.I was very forgetful when school started back, but I wrote a lot of notes to myself, emailed my self reminders of things I needed to do & used task reminders on my email calendar.
Make sure you have a surgeon who specializes in AVM.
Read as much as possible. I had 4 days between diagnosis & meeting with my surgeon for the first time. Everyone around me was freaking out. I read as much as I could on the internet & tried not to focus too much on what could happen. My husband & I made a quick worst case scenario plan. Then I tried to joke as much as possible & kept living my life & doing my job.
So sorry to hear of your husbands troubles. My daughter is 20 yrs. old and has a 5cm.avm in her right occipical lobe. She has had 3 embolizations with at least 1 more to come before her gamma knife. So far she has done amazingly well. She says that the headaches are still there but not as severe. She also had a field vision exam and does experience some blurry vision at times. So far our experience has been long, frustrating and scarey, but it is just because we are all used to wanting everything fixed quickly. and from what I understand there are no quick fixes to avms. Erin continues to go to college and after each embo. treatment is only on "bed" rest for 3 days. It is amazing to me that Drs. can go into the brain, work on it and within days my daughter is back to her normal activity. My suggestion to you is to trust in your Dr., get a second opinion if your not comfortable and use this site as much as you need for knowledge and support. Good luck to you both as you begin this journey that few people understand. God Bless you both,
Lisa