Arteriovenous Malformation (AVM) Survivors and side effects

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.

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.

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, @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?

Hello Lisa,
So good to hear from you. I was hoping to hear others say that deep ridges are normal. I was looking for that no-need-to-worry, a deeply lumpy skull is fine. Just wondering. Hope you are soon enjoying being outside in beautiful spring and soon to be summer in Rochester. And Maybe another will post on my question. Thanks.

Hoping to catch up with some of you who have posted here about your experiences with Arteriovenous Malformation (AVM) and see how things are going. I think it will be beneficial for all in this discussion.

@mockinbrd - did your doctor provide you any insights on the ridges you were noticing on your skull?

@avmcbellar - how is the neuropathy you talked about developing during your AVM treatment? You might also be interested in the Connect Neuropathy group https://connect.mayoclinic.org/group/neuropathy/, Have your migraines recurred at all?

@kiarastrong - thinking of you. How is your daughter?

@nusmal - are you still experiencing the floating sensation you mentioned?

@lisalucier thank you. I will get in touch with the neuropathy group. I still have neuropathy on my left side. Sometimes the pain and burning can be difficult to deal with. Drinking ice cold water and keeping the room temperature about 75 or lower seems to help. The Florida summers can get pretty warm so I briefly stay outdoors to enjoy my flowers. Somedays the intensity of the neuropathy seems decreased. When I feel better I do more around the house.
With the headaches, I do still get them but not as often, maybe once or twice a week. Caffeine does not seem to matter in eliminating the headache. I tried using omega 3 oil as a blood thinner but I did not see any improvement. I am not sure if moving around with poor vision is the cause. I did that in the past but now I do more. I still have the double vision. It has improved slightly. The dizziness and nausea stops me from several activities. I do what I can. Outpatient and home care physical therapy has helped me learn to walk again. I plan to do more physical therapy outside my home in the fall to learn to walk on uneven surfaces like the lawn.

What were your symptoms prior to finding your diagnosis

I had no symptoms just headaches my entire life.

Hi, @karla401 - welcome to Mayo Clinic Connect.

Here is some Mayo Clinic information on arteriovenous malformation https://www.mayoclinic.org/diseases-conditions/brain-avm/symptoms-causes/syc-20350260.

What have your headaches been like?