Arteriovenous Malformation (AVM) Survivors and side effects

Posted by auldcelt @auldcelt, Dec 16, 2016

I’m a survivor of an AVM in my right hemisphere. Since the surgery I am dealing wth migraines and wondered if anyone else has experienced this. If you have what have you tried to get back to normal living. I’m also interested in reading about studies and research on AVMs

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?

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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 @LeeAasehttps://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!

Liked by Lisa Lucier

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@johnbishop

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 @LeeAasehttps://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!

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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.

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@avmcbellar

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.

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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.

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@johnbishop

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.

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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.

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@avmcbellar

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.

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@avmcbellar — I do the exercise while I'm watch shows I recorded the evening before or I turn the TV to a music channel and that seems to help with doing the exercise without too much boredom. I think it distracts the mind a little so I can exercise a little longer than I normally would.

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@lisalucier

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.

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Hello to all. Mockinbrd here. I've thought of those who post here and continue to lurk (lol). I find it comforting to think and read about you all. It's been just over a year since my craniotomy. I see improvements in many areas but unresolved challenges too. Oops. I need to run. I'll post more later. Nothing like a good phone call.

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@mockinbrd

Hello to all. Mockinbrd here. I've thought of those who post here and continue to lurk (lol). I find it comforting to think and read about you all. It's been just over a year since my craniotomy. I see improvements in many areas but unresolved challenges too. Oops. I need to run. I'll post more later. Nothing like a good phone call.

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Hi, @mockinbrd – sounds like you had to go soon after your post, but it's good to hear from you. You are right that with every thread on Connect where members are posting, many more are not posting but following and reading. Glad that reading about others here in this AVM discussion is comforting to you.

When you get a moment, will you share more about in what areas you see improvements post-craniotomy and where you see unresolved challenges?

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@johnbishop

@avmcbellar — I do the exercise while I'm watch shows I recorded the evening before or I turn the TV to a music channel and that seems to help with doing the exercise without too much boredom. I think it distracts the mind a little so I can exercise a little longer than I normally would.

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@johnbishop TV shows help a great deal to pass the time. I started doing the Sit and Be Fit workout. The 30 minute show seems to end quickly for me. Now, I continue the vestibular therapy for my motion sickness until I can eventually use the elliptical machine for exercise.

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Hello. I came across this group as I was searching for information that might help me to understand why my daughter is having the migraine headaches she is having after radiation treatment on her AVM. She was initially diagnosed due to having complicated migraines or migraines with stroke-like symptoms. She would get them maybe 5 times a year. She gets the vision disturbances, numbness/tingling in the hand, arm and face and slurred speech. She will also get dizzy at times. She had her radiation treatment in April and on 6/15 she had one of her migraines with all the symptoms. This past Friday at midnight she had another one, again around midnight on Saturday and around 6pm Sunday and today around 6pm. We had a MRI done this evening and are suppose to meet with the neurologist and surgeon tomorrow to go over the test results. I am so worried and I can't help but to search the internet for answers. Anyone out there experienced the increased number of migraines like this?

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@bobbiejo13

Hello. I came across this group as I was searching for information that might help me to understand why my daughter is having the migraine headaches she is having after radiation treatment on her AVM. She was initially diagnosed due to having complicated migraines or migraines with stroke-like symptoms. She would get them maybe 5 times a year. She gets the vision disturbances, numbness/tingling in the hand, arm and face and slurred speech. She will also get dizzy at times. She had her radiation treatment in April and on 6/15 she had one of her migraines with all the symptoms. This past Friday at midnight she had another one, again around midnight on Saturday and around 6pm Sunday and today around 6pm. We had a MRI done this evening and are suppose to meet with the neurologist and surgeon tomorrow to go over the test results. I am so worried and I can't help but to search the internet for answers. Anyone out there experienced the increased number of migraines like this?

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Hi @bobbiejo13 I am sorry your daughter is going through the migraines. Did she have a ruptured AVM? I don’t understand the radiation treatment for an AVM. Was something else discovered? The outcome of deficits depends on the location of the AVM, in other words, what part of the brain the AVM affected. With my ruptured AVM I did get the awful migraines for which I received a prescription for a pain medication but I opted for Tylenol. The headaches came 3 times per week initially but a bag of ice on my head offered better relief. I found myself using ice on my head in order to sleep. I was told the headaches were part of the healing process. I could feel when my brain was making new connections. It occurred more often in the beginning. I too have visual disturbances. I do not get the migraines as often as I used to, maybe once every 10 days, but I wonder if the migraines are due to my diplopia. What kind of visual disturbances is your daughter experiencing? I did not get much information from my neuro ophthalmologist for treatment. Not much information was provided by my medical team of doctors because not much is known since there are not many survivors. Basically, I was left on my own to learn as I go through my experiences. Everyone is different but I will gladly help in any way I can. I strongly urge you to question each physician with what the plan of treatment is and why. After all, they are not the ones experiencing the awful deficits. How can they understand when there is not much information out there?

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@bobbiejo13

Hello. I came across this group as I was searching for information that might help me to understand why my daughter is having the migraine headaches she is having after radiation treatment on her AVM. She was initially diagnosed due to having complicated migraines or migraines with stroke-like symptoms. She would get them maybe 5 times a year. She gets the vision disturbances, numbness/tingling in the hand, arm and face and slurred speech. She will also get dizzy at times. She had her radiation treatment in April and on 6/15 she had one of her migraines with all the symptoms. This past Friday at midnight she had another one, again around midnight on Saturday and around 6pm Sunday and today around 6pm. We had a MRI done this evening and are suppose to meet with the neurologist and surgeon tomorrow to go over the test results. I am so worried and I can't help but to search the internet for answers. Anyone out there experienced the increased number of migraines like this?

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@bobbiejo13, I wanted to check back in with you. How was the appointment with the neurologist and surgeon? What did you learn? What are the next steps for your daughter?

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