Update: June 25, 2011

I been looking at everyone’s post and granted everyone’s journey has been an unique one…no doubt. But as much as I want to be supportive, I can’t seem not to vent. I supposedly had a successful brain surgery back in 2006 however, I still have double vision. I was told this would improve but it hasn’t. I understand the dizziness (the Cerebellum where the AVM was removed is the center of balance) but now I have numbness in both hands? At first it was just the right-side. I had an MRI back in April and they said it showed that the AVM had not returned which was my first guess. Does anyone have any experience with this? Yup… a little frustrated.

I can’t help you but please dont feel bad about venting! You must be so frustrated and tired of these problems with no answers. I hope you find something that helps. Have you been to an ophthamologist for your vision? And also look for other reasons for the hand numbness- like carpel tunnel or something unrelated to your brain surgery. Just a thought. I’m sorry you have all of this to deal with.

Thanks for the response to the blog Joy. I’ve always felt very strongly that I wanted to be nothing but a support to everone here who really needs it. I still want to do that but this is a support group, right? That kinda explains my hesitation at venting but I’m at wit’s end. I recently (last 6 months) went to an eye doctor who told me that other than the double-vision I was just experiencing some “age-related” eyesight issues and nothing more. Um… ok. I was most concerned with the numbness in my hands and feet (on the right-side at the time) and after a visit to a neurologist and MRI of my neck and spine (which showed nothing unusual) and a nerve test I was told very little that explained anything. Just stop crossing my legs and be very aware of what side I sleep on. Um… ok. So it seems I’m back to square one. Besides my left hand is now a bit numb. I guess I just want to know why. But I digress. Again thank you for responding and I hope your son is doing better and know he’s in my thoughts.

Hi, Suzy. Besides dealing with the lingering and interfering 'after effects' (double vision, dizziness, hand numbness, etc.), hope you are doing well. The locations of our AVMs are very close. I have the lingering, didn't-resolve-on-it's-own double vision (as well as balance issues still) and my surgery was in Aug. 2009. Wow, 2006 was your surgery and you have managed to find a way to manage with double vision for approx. 5 years... I'm impressed (don't sell yourself short because the lingering double vision is a HUGE problem for us/one to overcome when it persists). 'Frustration' = know it all too well myself (grrrrr and *sighes*).

(I sent you a friend request so you can email the following information so I can try to see if I can offer you any viable ways that would help you. Please send me an email and let me know: (1) what you have tried (that does and doesn't work) for EACH side effect you are still dealing with and (2) what you are/have currently been doing that allows you to be able to 'function', etc..)

Hope you have a WONDERFUL day!

Hi Suzy,

One of the other members, Laura Besser, recently had surgery that corrected her double vision. She told me that she would be happy for you to contact her to talk about how the surgery has helped her.

Take care,


Thanks Deb. I definitely will. Hope you’re doing well and thanks for reaching out.

Hay, can’t really help you I am sorry but just wanted to let you know that you can vent all you want, we all can’t be positive, supportive and all the rest all the time. We all need time to vent and that is what this group about.
I hope you find some answers
Stay strong and take care

I understand your frustration. I had successful avm surgery in my brain in 1996 but just about a year and a half ago started having extreme weakness on m y right side. I am now getting uncontrollable shaking and my right leg drags. I’ve been told it’s scar tissue build up. But symptoms mirror MS and Parkinsons. I’ve had balance issues and have fallen twice but I’m told its not any auto immune disease however I have not been checked for those. It is frustrating.

Wow surgery in 1996. Please keep in touch and tell me how you’re doing. I feel really guilty that I had “successful” surgery but I still have side effects 5 years later. Most people are still going thru their journey with their AVM’s but regardless everyone I’ve met on here is really nice and supportive. Again best of luck to you in everything. Thank you for responding to my blog.

Hi Suzy,

It sounds like we have a similar AVM experience. Mine, too, was located in my cerebellum and I suffer from 2x vision (very noticeable), dizziness (not so much). etc. My surgery to remove avm was early Nov. Still have 2x vision but seeing neuro-opthomologist. Maybe he'll help. Any improvements on your end?