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

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@lisalucier

Hi, @avmcbellar - welcome to Mayo Clinic Connect. Good to hear you got some relief from the awful headaches following your AMV surgery.

Did you experience any other side effects of your surgery, @avmcbellar?

@levity - it sounds like you've been through a lot of therapy in your recovery following your AVM rupture and emergency surgery. How are things going with the head rushes and headaches?

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Replies to "Hi, @avmcbellar - welcome to Mayo Clinic Connect. Good to hear you got some relief from..."

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.