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AVM Survivors Network

Medical drama/venting

Not really sure where I left off with my last post but I’ve had 4 embolisation’s total on my avm in my right heel. The short summary to the madness is i was told it didn’t work, wasn’t a candidate for chemo, had a follow-up MRI to try and come up with a plan c and voila it’s occluded. I kid you not when I got the call new years day I thought the nurse was joking. In the middle of all this i had the pleasure of being diagnosed with a weird form of airway stenosis and a weird/rare form of thyroid disease (lol I’m continuously adding new health issues to the list of things to manage/figure out :blush:) Fast forward 4 months- I did 3 months of pt, still dealing with pain which sucks but it’s a lot better than before and I got an AFO which helps a lot. The thing that’s been the most frustrating is people acting like everything is normal now, like I can just go out and get a job whenever. I just want to tell them you do realize I haven’t walked correctly in 13 years? That I had to be taught how to walk correctly?? I’m doing all these things for the first time in my life and/or the first time in years and so many people in my family act like it’s not a big deal. Lol long story short it’s a lot of self motivation

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Hi KoalaLove:

Just read your post and my heart goes out to you! You have suffered so much but you are still moving forward. You are strong and determined and I admire that! My AVM is a pain in-the ass, I mean head, but my journey does not compare to yours. Family members can cause extra pain and drama. We get it. They don’t! Will keep you in my prayers.

Sharon D…

Firstly I’m so glad that you are finally getting some relief and that you are able to do the hard work of walking in a safe way. I feel you on the family issue. People act like just because the surgery is over the recovery is too. Or just because you had surgery once its gone forever. Yes you are so right that you have to re-learn to do things. In fact I have arthritis as a result of my weakness related to the location of my VM. I also have compensation issues between my right and left because the right is always so much weaker no matter how much physical therapy I do. Hang in there, just like any other chronic condition it gets better and worse if fits and starts. I hope you are moving in the better direction and congrats of learning to walk again!

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Umm…if I may ask, what is an AFO?

Sorry :blush: should have written it out lol I’m used to just saying AFO. But AFO stands for adaptable foot orthotic, their made by prosthetics and orthotics companies. They make a mold of your leg and then make the brace to fit you specifically. People use them for different reasons but for me I got it because I have so little muscle in my leg/balance issues and to take the pressure off of my heel. Also to explain what they look like every one is a little different but for me at least it has two straps around my leg and it just slides in my shoe

Thank you for mentioning the arthritis- I was recently diagnosed in my back right around where my AVM is and has been treated—- I wondered if there was a correlation but the doctors locally had no knowledge on the subject.

I don’t honestly know. My VM is very deep in my soleus muscle. Which has made my ankle unstable and it’s rolled/twisted/sprained/mold brake so many times I have arthritis in my heal. I don’t think it’s 100% caused by my VM but more by the repeated muscle damage caused by multiple embolizations and injuries. I’m 34 which is young for arthritis. Perhaps there is a correlation, or perhaps not.