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

@mockinbrd

Thanks for the kind words and thoughts. It's comforting to have a place like this to learn how others deal with their unique situation. It is the not knowing the outcome. My series of procedures (two angioplasty to stabilize-glue) and then the next day a large operation (told the operation would take about 5 hours). That sounds like a lot. Monday I might contact the team to ask about after care. I was told about 5 days in hospital but then what? I hutch is they don't know. My guess is each person, each medical problem, each medical adventure is unique and outcome unknowable. That is the most difficult. I was told I would have some vision loss in both eyes in the peripheral area. I wonder how much is "some". My journey is beginning I hope it is smooth and uncomplicated. Time for me to get some shut eye. Nighty night.

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Hi @mockinbrd, I wish you well. It is true, each case is different and unique making it difficult to know the outcomes and treatment. Get all the facts from your medical team and decide what is best for you. Unfortunately, there is no real guarantee but you do have some control by knowing as much as you can in order to make good medical decisions. I did have a visual impairment as a result of my ruptured AVM. My neuro medical team did not have a diagnosis and did not know how to treat my issue. I later went to a neuro opthamologist for answers and got the help. I made my medical decisions based on the information I received.

You need to be patient and realize improvements may be gradual, as in my case, but nonetheless, they do continue to grow as long as the effort is there. Don’t despair, there is help out there for you to discover. Remember, physicians do not have all the medical answers so it is up to you to find them. Learn about your body through trial and error. Don’t be afraid to try things. I asked my neuro team first for authorization. For example, I asked about taking specific supplements and which activities not to do. Luckily, I was cleared to do as I pleased which made it much easier. Your decisions for the trial and error will be based on your medical research. The good news is that your body continues to adjust itself and learn from what it goes through so make the time count. I had local people tell me that they remained lying down for a year or two because it was easier on them. That is good but, on the other hand, it may have delayed their recovery.

Remember, you will always have us to talk to you and learn of different efforts made by others. I hope this information is helpful.

Liked by Lisa Lucier

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@avmcbellar

Hi @mockinbrd, I wish you well. It is true, each case is different and unique making it difficult to know the outcomes and treatment. Get all the facts from your medical team and decide what is best for you. Unfortunately, there is no real guarantee but you do have some control by knowing as much as you can in order to make good medical decisions. I did have a visual impairment as a result of my ruptured AVM. My neuro medical team did not have a diagnosis and did not know how to treat my issue. I later went to a neuro opthamologist for answers and got the help. I made my medical decisions based on the information I received.

You need to be patient and realize improvements may be gradual, as in my case, but nonetheless, they do continue to grow as long as the effort is there. Don’t despair, there is help out there for you to discover. Remember, physicians do not have all the medical answers so it is up to you to find them. Learn about your body through trial and error. Don’t be afraid to try things. I asked my neuro team first for authorization. For example, I asked about taking specific supplements and which activities not to do. Luckily, I was cleared to do as I pleased which made it much easier. Your decisions for the trial and error will be based on your medical research. The good news is that your body continues to adjust itself and learn from what it goes through so make the time count. I had local people tell me that they remained lying down for a year or two because it was easier on them. That is good but, on the other hand, it may have delayed their recovery.

Remember, you will always have us to talk to you and learn of different efforts made by others. I hope this information is helpful.

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Hello
Thanks for your insights and helpful words. The community here is very comforting. You are able to help me look more to the positive. Yes I will take it one step at a time and I am very lucky to deal with my AVM and aneurysm (s) prior to a CVA. Keep in touch. Thanks.

Liked by Lisa Lucier

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Hi.. I just went for a brain operation due to avm..Recently i amhaving some floating sensation. Went through a ct scan and found nothing.. just wondering did anyone have the same feeling too..

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@nusmal

Hi.. I just went for a brain operation due to avm..Recently i amhaving some floating sensation. Went through a ct scan and found nothing.. just wondering did anyone have the same feeling too..

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Hi, @nusmal – welcome to Mayo Clinic Connect. Hoping that you and your surgeon felt the surgery for your arteriovenous malformation (AVM) was successful.

I imagine that would be frustrating to have this floating sensation and yet have nothing found on a CT scan.

I'd like to invite @levity @heather8900 @stellgma @auldcelt to return and offer their thoughts about the floating sensation post- AVM surgery. @kariulrich and @johnbishop may also have some thoughts.

How far out from your surgery are you now, @nusmal? Have you had the chance to talk to your surgeon about this floating sensation you are experiencing?

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@lisalucier

Hi, @nusmal – welcome to Mayo Clinic Connect. Hoping that you and your surgeon felt the surgery for your arteriovenous malformation (AVM) was successful.

I imagine that would be frustrating to have this floating sensation and yet have nothing found on a CT scan.

I'd like to invite @levity @heather8900 @stellgma @auldcelt to return and offer their thoughts about the floating sensation post- AVM surgery. @kariulrich and @johnbishop may also have some thoughts.

How far out from your surgery are you now, @nusmal? Have you had the chance to talk to your surgeon about this floating sensation you are experiencing?

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Hi @nusmal, I would like to add my welcome along with @lisalucier and other members. It sounds like you are recovering and staying in touch with your surgeon and the surgeon is aware of you recent floating sensation symptoms? I was not familiar with the surgery and did a search for information. I found an article on recovery that may provide some information on what to expect.

Arteriovenous Malformation Repair: What to Expect at Home
https://myhealth.alberta.ca/Health/aftercareinformation/pages/conditions.aspx?hwid=zc2754

Liked by Lisa Lucier

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My mother (49) had experienced stroke like symptoms this time last year. Several months later her Nero physician order some scans and he observed an abnormality in her brainstem (ponds). She recently undergone two surgeries to embolize the avm, he was only able to apply the glue to only 50% of the desired area. Now the physician is recommended she seek an second opinion; possible radiation (gamma knife). It’s just emotionally overwhelming seeing my mother go through this, I feel helpless. Thank you in advance for hearing me out and responding.

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Hello,
Thank you for members and moderator support. I posted a couple of times 1/31/19 and for the next few days. Recently, I have been lurking and trying to think about engaging. I would like you to know how very much this website has helped me even when I was not posting. I had a surgical fix to my avm that left me with some unexpected deficits. Posting is now more laborious. And I was away from home for well over a month. But, I like the positive and helpful attitude I find here. So this is my thank you to those who help and contribute to Mayo's website. (to name a couple- Kari Ulrich, avmbeller, Lisa Lucier to name a couple off the top of my head) . I hope to find more help with rehab and being positive is key for that.

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@mockinbrd

Hello,
Thank you for members and moderator support. I posted a couple of times 1/31/19 and for the next few days. Recently, I have been lurking and trying to think about engaging. I would like you to know how very much this website has helped me even when I was not posting. I had a surgical fix to my avm that left me with some unexpected deficits. Posting is now more laborious. And I was away from home for well over a month. But, I like the positive and helpful attitude I find here. So this is my thank you to those who help and contribute to Mayo's website. (to name a couple- Kari Ulrich, avmbeller, Lisa Lucier to name a couple off the top of my head) . I hope to find more help with rehab and being positive is key for that.

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@mockinbrd Thank you for lurking, thank you for posting and updating us on your AVM. I wish I could reach through the internet and give you a hug. I lurk too… sometimes that is the only strength I have. Sending my love and positive thoughts for healing. I will hold off on asking you questions, but when you have more strength would like to hear about your experience and deficits. I know it took all of your strength to post today. <3

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@ad_walker

My mother (49) had experienced stroke like symptoms this time last year. Several months later her Nero physician order some scans and he observed an abnormality in her brainstem (ponds). She recently undergone two surgeries to embolize the avm, he was only able to apply the glue to only 50% of the desired area. Now the physician is recommended she seek an second opinion; possible radiation (gamma knife). It’s just emotionally overwhelming seeing my mother go through this, I feel helpless. Thank you in advance for hearing me out and responding.

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Hi, @ad_walker. Just wanted to check in with you to see how your mother is doing? You'd mentioned a potential second opinion and/or gamma knife treatment for her. Are you proceeding with either or both of those?

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@mockinbrd

Hello,
Thank you for members and moderator support. I posted a couple of times 1/31/19 and for the next few days. Recently, I have been lurking and trying to think about engaging. I would like you to know how very much this website has helped me even when I was not posting. I had a surgical fix to my avm that left me with some unexpected deficits. Posting is now more laborious. And I was away from home for well over a month. But, I like the positive and helpful attitude I find here. So this is my thank you to those who help and contribute to Mayo's website. (to name a couple- Kari Ulrich, avmbeller, Lisa Lucier to name a couple off the top of my head) . I hope to find more help with rehab and being positive is key for that.

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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.

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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.

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@mockinbrd

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.

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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?

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@lisalucier

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?

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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.

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@mockinbrd

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.

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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/.

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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.

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