Arteriovenous Malformation (AVM) Survivors and side effects

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.

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, 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.

Welcome @mockinbrd we are happy to have you here, you are not alone. I know you will get a lot of insight and support in this group. I have a small AVM that was discovered several years ago that found while monitoring for my vascular disease. It was very scary when I was told... honestly at times, even though mine is small and has not changed significantly there is always an underlying fear. I believe it is a good to know so you can prevent future problems. I look forward to what others have to say and know I am thinking of you.

This is my first post on Connect. I have an AVM that was recently discovered via an eye exam, confirmed via an MRI and then a brain angiogram. My AVM has not ruptured and I plan on having it fixed at Mayo’s in the future. Any ideas, recommendations, or thoughts from your experiences. Thank you and yes,I'm scared.

Hi, @lisalucier and @levity, thank you. Great to hear from you. Although I had the rupture of my AVM 2 years ago, I have been trying different supplements and treatments in hopes of finding improvement and relief. It has been a learning experience for me since my medical team has no answers. At the point of rupture of my AVM, 5 blood vessels were involved. The neuro medical team did not expect me to survive. I have been through an initial surgery to stop the bleed then 3 surgeries later for the embolizations to repair the AVM. During the last embolization, I developed neuropathy on left side of my body. I deal with the burning pain and extreme temperatures of my skin. It’s more prevalent on my left hip and leg. Did anyone find any relief for neuropathy? I also lost my taste to food 2 months after my AVM rupture. It has diminished slightly but I am still very sensitive to the sweetness in foods. I have learned which foods have a less overwhelming sweet taste and it has nothing to do with the carbohydrate count. Did anyone experience a change in taste with food?

Now, I only drink 1 or 2 cups of caffeinated tea daily and am happy to say I experience no headaches. What a relief! I haven’t iced my head in over 6 months. Later this week I will be starting outpatient therapy again after 1 and 1/2 years. Looking forward to the physical therapy assessment.

This is my first post on Connect. I have an AVM that was recently discovered via an eye exam, confirmed via an MRI and then a brain angiogram. My AVM has not ruptured and I plan on having it fixed at Mayo’s in the future. Any ideas, recommendations, or thoughts from your experiences. Thank you and yes,I'm scared.

Hi @lisalucier, thank you for the information. My neuro team has no answers regarding what to expect or what to do to help with my recovery. They say, “we don’t know” because as they explained, not many people have survived. I was told I was very lucky. I decided to partake in a case study in order to help others who suffered a ruptured AVM.

Yes, I did start outpatient therapy last week. It has been a big help doing exercises to improve my balance. I do daily exercises on my own at home as well. The exercises seem to get easier the more I do them. Thanks for asking.