← Return to Arteriovenous Malformation (AVM) Survivors and side effects

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@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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Replies to "Thanks for the kind words and thoughts. It's comforting to have a place like this to..."

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.