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Arteriovenous Malformation (AVM) Survivors and side effects
Stroke & Cerebrovascular Diseases | Last Active: Oct 19, 2023 | Replies (97)Comment receiving replies
Hi, @avmcbellar - I'm sorry to hear that your medical team has no answers. Do you mean they don't have answers about why the AVM developed, or about another aspect of your diagnosis or care?
I'd suggest you may be interested in checking out our Connect Neuropathy group https://connect.mayoclinic.org/group/neuropathy/. Regarding the changes in your sense of taste, I imagine that would make eating rather frustrating. I know that @keithwalker mentioned his daughter experienced loss of her sense of taste, and @tikigod18 mentioned his wife went through something similar. They may have some thoughts for you.
Also hoping members in this discussion like @levity @heather8900 @tanvir22 @stellgma @kariulrich and others will comment on whether they or their loved one with an AVM has dealt with any neuropathy or changes in sense of taste.
Have you now had your physical therapy assessment, @avmcbellar?
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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.