Arteriovenous Malformation (AVM) survival and side effects

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.

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.

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.

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.

I have had change of taste in foods years ago, but it was not contributed to anything vascular. I thought maybe I was having a TIA as I having other strange symptoms. My neurological exam and work up were normal. Following this post. Thank you for sharing your experience.

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, 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.

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?

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.