Arteriovenous Malformation (AVM) survival and side effects

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?

@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

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.

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.

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

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?

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..

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.

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.

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.