Arteriovenous Malformation (AVM) survival and side effects

Hi, @mockinbrd - wondering if some of the others in this discussion, like @avmcbellar @nusmal @ad_walker @levity have experiences to share about developing deepening ridges along where the surgeon cut their skull. @kariulrich may also have some thoughts or information to share.

@mockinbrd - did you have a chance to talk with your surgeon about the ridges and see what he or she thinks about this?

Also, @nusmal, are you still experiencing the floating sensation you'd mentioned before?

In February I had a craniotomy to deal with my AVM. Recently, I have developed deepening ridges along where they cut my skull. Anyone experience this? Thank you for any ideas.

Hi everyone,

I'd like to invite you to join us today, Wednesday, May 1 at 12pm CT for a video Q&A. Drs. William (David) Freeman and Rabih Tawk will be discussing all aspects of stroke, and will answer questions during the live broadcast.
Simply click https://connect.mayoclinic.org/webinar/video-qa-about-stroke-2/ for details.
Drs. Freeman and Tawk will answer questions live. Post your questions before and during the broadcast.

Return to this page, https://connect.mayoclinic.org/webinar/video-qa-about-stroke-2/ to take part in the video Q&A live on May 1 at noon CT. It will also be archived on this page.

I'm so pleased you were able to stumble across this forum. I think you will find genuine support here. I’m sure you will experience sincere hope for your daughters full recovery. I went to Mayo's in January 2019. Had a craniotomy and lengthy surgery after couple of angiograms and coils for stabilization. No one is promised 100% in life. But I think you can expect your health professionals to give you their best medical treatment they can give. You will find sincere efforts on your daughters behalf. Best of luck. Let me know if I can help.

Hello, I stumbled across this forum desperately looking for information about AVM. A rare disease that attacked my 18 yr old daughter the morning of April 6, 2019. She is in NICU fighting for her life. I never heard about this abnormality of veins she was such a healthy child nothing out of the ordinary. May God Bless You all I'm hear reading your posts and I'm in tears. God Give us Strength and Power to see this through.

Yes, we did get quite a bit of ice and snow in Rochester, Minn. this past week. Thought we'd put away our snow shovels for the season, but alas, no.

Bumping into things sounds difficult. Getting some ideas from others would be great.

What I'd suggest the most for the visual cut and suggestions for managing that is to post in the Connect eye conditions group https://connect.mayoclinic.org/group/eye-conditions/. I think there you will find other members who have quite a bit of experience with eye issues. In Getting Started on Connect there are some instructions on how to start a new discussion https://connect.mayoclinic.org/get-started-on-connect/.

Hello Lisa, how are you dealing with Rochester snow? I thought April showers were suppose to bring May flowers, not snow. Oh well. Hope you have a great summer after this winter. You guys must need it.
Now...visual cut. I don't quite know where to get help and I'm a little hesitant about asking. I'm adjusting to keeping myself safe. I bump into things I can't see. I was told to 'scan' by P.T. but....that doesn't cover all bases. Again, I welcome all suggestions. Oh, I did get a walking cane. That is a huge help. That gives me a sense of where I am, if I'm out walking.

Hi, @mockinbrd - just wanted to ask you more about the visual cut you mentioned experiencing after surgery. Are you looking for help dealing with it, finding a doctor to see you to address it, or what information and support would be most helpful related to your limited visual field?

Does anyone have experience &/or knowledge regarding a visual cut. After surgery one result was a limited visual field. Would appreciate any ideas on this issue.

You are welcomed! Thank you for posting your progress and keep being positive! I had several AVM repair surgeries but my last one, 2 years ago, left me with neuropathy on my left side. The burning sensation gets very painful but I still remain positive and try to find help. Has anyone had any positive experience with acupuncture for their AVM after repair or neuropathy? I was thinking of trying it next. I believe staying positive is the way to go to overcome the deficits. Recovery is a slow progress so hang in there! Glad to see you are doing well.