Arteriovenous Malformation (AVM) Survivors and side effects

@karla401, @aadgloria1401, @avmcbellar, @mockinbrd, @nusmal -- I was hoping to hear if you have had any change in your symptoms or treatments that you can share with other members. I ran across a recent study that I thought might be of interest to you.

Multimodality treatment of intracranial arteriovenous malformations in South Island, New Zealand
-- https://www.sciencedirect.com/science/article/abs/pii/S096758681931985X

John, thank you for your inquiry. Very kind of you to ask all of us. A couple of days ago I was able to celebrate my one year anniversary since my craniotomy for my arteriovenous malformation. I believe I'm doing very well and able to do much of what I want. I see slow, steady, but continued progress in most areas. More than occasionally I wonder how others who have posted here are doing. I found the support from members and moderators very very helpful and important at various times. Again thanks to all. Would like to hear how others are doing.

Hi,@johnbishop thank you for asking. I had made a few dietary changes and saw an improvement. My neuropathy has become more manageable eating a Keto diet. I eat much less food now and try to consume foods less acidic. The bloating has decreased as well as the burning sensation in my stomach and esophagus. I feel much better. As for the Home Health physical therapy I will start in a month to learn to balance while walking on my lawn. I feel my eyesight has not improved because of the burning pain from the eye strain. I still see double. I feel it contributes to my motion sickness and headaches. I will see my neuro ophthalmologist in June. Turning my head quickly still causes dizziness. My ability to see well reflects on both simultaneously, turning my head and my eyesight. I am hoping a pair of glasses with a prism will help. My disability is all physical from my AVM rupture. I have no cognitive deficit. I have learned to use my left hand more often instead.

I have had an AVM rupture with repair 3 years ago. Since my last surgical repair I was left with neuropathy on one side of my body. At the time the surgeon told me it would go away but I still have it. I have difficulty losing weight since the AVM. Before my AVM I had no weight issue. Not sure exactly why when I switched to a Keto diet 6 months ago. Has anyone overcome the same experiences?

Hi, @avmcbellar - I wanted to let you know I moved your post here to this discussion on arteriovenous malformation (AVM) survivorship and side effects where you've posted before so you can connect with others dealing with post-repair side effects and get their input. Hoping members like @mockinbrd @aadgloria1401 @karla401 will have some thoughts for you on the neuropathy that has not gone away as projected and the weight loss difficulty since the repair. @kariulrich and @johnbishop also may have some insights.

avmcbellar - has anything made a difference in the neuropathy? Have you had the chance to talk with your surgeon about her or his opinion on the weight loss challenges since the surgery?

@kiarastrong - thinking of you and your daughter.

Hi @lisalucier. Thank you for your assistance with my post. I am trying to figure out why I have weight issues when despite all my attempts I have not been able to lose any weight since the AVM. I am wondering how to lower my blood sugar count. Why is it high when I am on the Keto Diet?

Hi, @avmcbellar – Losing weight when you have health conditions can be a challenge. I tried a keto diet a few years ago but it didn't seem to help much for me. I was not on any medication at the time other than my blood pressure drugs. When I was on prednisone for my PMR, I was constantly battling weight gains which was when I tried the keto diet that I found in Dr. Terry Wahls book The Wahls Protocol. She has an amazing story of how she was able to treat her MS symptoms through diet and cellular nuitrition which helped look more at nutrition and diet for answers. I've recently this past month started an intermittent fasting program to lose weight that looks pretty promising so far. I found out about intermittent fasting from a blog - My Health Journey by @LeeAase -- https://social-media-university-global.org/my-health-journey/. The first entry that caught my eye and where I started following Lee to learn more was his entry - An Unfortunately Named Book and my interest was really peaked by a video by Dr. Jason Fung - Fasting as a Therapeutic Option.

Hope this helps!

Hi @johnbishop. I have been looking at the attached article. Seems like a simple idea to follow. Since I’m on the keto diet and a pescatarian, the five rules should not be difficult at all. I will continue to research the information before trying this diet. Did you exercise regularly while on the keto diet? I did not. After looking at my blood draw results I questioned why my blood sugar was in the high 90s. My PCP was not concerned to point it out but I am because I want to avoid diabetes. The dizziness from the AVM has been limiting my abilities. I plan to do what I can to exercise vigorously 3 times per week. Thank you for the information. I appreciate your help. I am happy you found a diet that worked for you.

Hi @avmcbellar, I didn't exercise regularly while I was on the keto diet. Actually I didn't start doing regular exercise until early last year just prior to my right knee replacement and I just continued doing it on a daily basis. I have an elliptical and recumbent bike combo exercise machine that I was using mostly the bike before the knee replacement but then started using the elliptical 30 minutes or so a day. I recently bought a Sand Dune Stepper (https://www.sanddunestepper.com/) which I'm now using 30 to 60 minutes a day in 15 minute increments along with the elliptical. I don't get crazy with the cardio part but do it enough to get my heart rate slightly elevated.

Hi @johnbishop. That is awesome you are doing all those exercises! I have never seen the sand dune stepper before. Exercise has many benefits so keep up the good work. How do you use it without getting bored? I started home care physical therapy last week to help with my balance issues. I do daily exercises to decrease dizziness. It seems to be working. The less dizziness I have the more activities I can enjoy.