Arteriovenous Malformation (AVM) Survivors and side effects

Hi @mockinbrd, welcome to the discussion group. Yes, treatment can be scarey but on the bright side your AVM was discovered before rupturing. Asking your neuro medical team questions of what to expect can help alleviate the worry. I think the aftermath of a rupture can be far more worrisome and recovery more difficult. I went through several operations to repair the AVM and a year after my last surgery I had a cerebral angiogram which revealed the AVM did not reform. My deficit from the last repair was the neuropathy on the left side of my body. What is scarey is not knowing expectations for recovery. What to do or not to do.

During my angiogram, I was alert for questions and guidance throughout the procedure. I did not experience any difficulty. I hope this helps.

Thank you Kari! Right now I’m so hectic and stupor-ish at the same time, Air flight reservations, hotel, where will my plants go, shuttle to Rochester reservation, spoke to an attorney for Living Will and Last Will and testament, also home MD appointment. Then let's play a few hands of commuter solitaire and fog out. Please be patient with my replies. I must run and do laundry and thank you again. I'm so glad to know help like you is out there for the panicky like me.

Dear avmbellar,
You are so right, it is good to catch the AVM before any rupture. Sounds like you have been through a lot. My journey is just beginning. Please note my post to Kari about being in a panic and stupor simultaneously. I hope a list of questions for me to ask can be developed. I know the plan is angiogram for glue to aneurysm then repeat with another angiogram. Then they plan on going in to remove the AVM a day later. They plan on removing part of my skull for that operation. Any experience with that? I don't even know what questions to ask for that. I must run. Thank goodness for this site to be able to express my concerns. Thank you.

Hi @mockinbrd. I think it’s good to keep occupied with your daily routines. Do as much as you can without the disruption. It will get your mind off any worries.
I also had the glue to fix the AVM. For the last 2 surgeries to repair my ruptured AVM, the medical team used my right femoral artery for access instead of removing my skull. I have a friend who also had an AVM without rupture. Her medical team also did an angiogram to repair her AVM but accessed it through her brachial artery instead. In the process, they discovered a brain tumor which they later removed through surgery via the skull. My friend is recovering very well and is currently doing outpatient therapy to improve balance issues.
Discuss your options for the surgery to decide what is the best avenue to take for you. My friend planned ahead and participated in outpatient therapy prior to the surgery which increased the strength. Comparing physical evaluations before and after the surgery helped tremendously with the treatments. Outpatient therapy knew exactly which deficits to target.

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.

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.

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.. 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..

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 @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