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AVM Survivors Network

New To Peripheral AVMs

#1

Hello everyone! I’m excited to find this group and get to know some other people who are struggling with AVMs. I was just recently diagnosed with one in my foot- I think this must be pretty unusual, as I can’t find anything about foot AVMs online! I am in a lot of pain right now and can’t stand or sit up hardly at all without the vessels in my foot swelling like crazy. The problem has progressed quite rapidly since I got surgery in my foot about a year ago, and especially in the last month.

Aside from the AVM, I live in Oregon and love to write and play the piano in my free time. I am also diagnosed with Hypermobile EDS, Mast Cell Activation Disorder, and POTs syndrome. I’m not excited about the diagnosis but I am excited to learn more and hopefully get answers soon.

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#2

Welcome to our site, and thanks for joining us! There is an Extremity Group here and we have a number of folks with various extremity AVMs. If you click the three lines in the upper right quadrant, click types of AVMs and it will provide a list and you’ll see:

AVM in Extremities
Use the AVM in Extremities category for AVMs in arms, legs, wrist, ankle, hand, foot.

You’ll see a wide range of experiences with these things, and in a variety of locations, mine was left temporal. We understand a lot of what people are faced with dealing with these, and you have some other factors involved as well that probably complicate things more. Again great you’ve connected with us, take care, John (from Manitoba).

#3

Thank you!

#4

Welcome!

You are not alone at all! We even have some people with EDS. I’d like to introduce you to @HopeErin @KoalaLove @Kirsty79 @Angela4 @EmmaMargret and @corrine.

Richard

#5

Good morning!

I have been away for a while battling with, wouldn’t you believe it, but an AVM in the bottom of my left foot. I have been struggling greatly with the same things you have been talking about, and it’s lead to me traveling for surgeries that have been… sort of helpful? Needless to say, it can definitely consume you.
I am from Wisconsin, but love to go visit my friends out in Oregon during the summer! There are some lovely sites. It’s also awesome you have an outlet in music, it can help so so much.
I hope you find comfort in this little community, I know I have. If I can act as a resource, support person, friend, or question fielder please don’t hesitate to reach out! I hope you have a wonderful day, and welcome! :sun_with_face:

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#6

Hi and welcome! I also have an avm in my foot (my right heel specifically). I’ve had 4 embolisation’s and found out a few months ago it’s occluded (not sure if it will stay that way but I’m crossing my fingers :blush:). I had dealt with issues with my foot for years before I finally got a diagnosis and when I did, I cried I was so happy. Of course I don’t think anyone wants to be diagnosed with some rare health issue but it’s nice to have everything you’ve been dealing with be validated. Like @HopeErin said feel free to message if I can be any help with questions or just to chat :hugs:

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#7

As bad I hate to say this but reading about the experience this group has had does bring confort. Just like talking about AVM in a foot… mine was in my spinal cord. Left me with Brown Sequard syndrome. My life changed forever. Keep the faith…God is with us no matter how we feel. Remember the rainbow comes after the storm. Stay the course. I’ve not found anyone that has Brown Sequard syndrome as the result of AVM in the spinal cord. Like most that has had AVM no way to fully explain to someone else what it’s like after their operation.

#8

Hi:

I would just like to welcome you to the group.! We’re a great bunch of folks who are willing to share and support you on your AVM journey. Although my AVM is different from yours, I have an AVM nevertheless. I just wanted to say hi and welcome. So glad you found us.

Sharon D…

#9

Thank you for sharing Erin! It’s only been a few days since I was diagnosed, and It’s so confusing and overwhelming. EDS isn’t nearly as rare, and so I have a much bigger support network and friends who struggle with those things. The worst part is how fast it’s progressing. I haven’t been able to talk to any AVM experts and just in the last 8 days since I have been diagnosed it’s gotten so much worse and is freaking me out. I went from walking around pretty well less than a month ago to being stuck with my feet up above my heart for all but a couple of hours a day. When I do sit up or exert myself I get exhausted easily and I can hardly think at all. Just in the past few days I’ve become too weak to do many of my Physical Therapy exercises. Not to mention the excruciating pain and numbness in my foot. I have had many, many types of pain over the years. This one is the absolute worse. It is so stressful! I really appreciate you reaching out and your support. :slight_smile:

#10

thank you! This forum seems really nice.

#12

Thank you! My foot and I have definitely had a rough go lately, to say the least! My foot needed the surgery I got on it as well- the foot was structurally flawed so it couldn’t hold me up. But I didn’t know about the AVM and oh. my. gosh. That was the most excruciating pain of my life. Like, I WOKE UP with 4/10 pain when I should’ve felt nothing and the nerve block didn’t last at all. I ended up in the ER twice from the pain and didn’t get off pain medicine for well over a month. So I’m excited to find out what happened but I wish I had known earlier so I didn’t have to go through that! I would love to message you and learn more about your experience for sure! Having someone to talk to really means a lot for me, especially in these beginning stages.

#13

Thank you so much for sharing!

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