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AVM Survivors Network

Pain, tingling, and new symptoms

I have multiple AVM’s, but most reside within my extremities; the left to be specific. I have had six embolizations with the last one utilizing the “direct stick” approach. Everything had been improving and overall very positive from about 6 weeks post op up until about 3-4 weeks ago. I noticed my pain was coming back, both in the same spot and new. I also have been experiencing bilateral numbness and pain in my legs, with the left being worse than the right. On top of this, I have been nauseous with chest pains. All of my vital signs have been normal other than my blood pressure dropping if I stand too fast. I have been reaching out to my current doctor who did my most recent surgery to ask about these symptoms, but have not gotten any help despite a few voicemails, speaking with receptionists, and sending emails. Has anyone else suffered from these problems or have any tips? It’s increasing in severity and becoming a less and less tolerable.

I can’t provide any personal experience that may be beneficial but just wanted to say hi. I read about people’s experiences with the extremity AVMs and see just how challenging they are. I hope some folks can chip in but am always concerned when people have trouble speaking with the Drs. I always make a point to make sure I have the nurse’s contacts and have always gotten the return call from them. Stay strong and take care, John.

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@HopeErin

I’m sorry you’re having such a difficult time. It’s the bilateral nature of it that bothers me here. Did you have treatment on both sides for different AVMs, or just left side? If you’ve had treatment only on the left but are having bilateral issues, I would definitely want to follow up.

Otherwise, I do think we tend to expect everything to happen in a straight line – get a little bit better every day – but with brain AVMs (I don’t know about extremities – they could be similar) getting better is definitely not a nice, straight, predictable line.

Very best wishes

Richard

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I know 3-4 weeks is generally a remodeling stage. This is when new blood vessel paths are formed. It can also happen that if you have any low flow vessels they experience new thrombosis. Numbness is usually a nerve issue it could be compressed or pinched or there could be nerve damage as the result of embolization. Did you have glue, alcohol or something else? Sounds like your doctor isn’t responding well do you have a primary care physician who could rule out other things. It might be good to get blood work to make sure nothing else is going on (you caught a virus) or you’ve thrown a clot. My VMs are all on my right side but I’ve never had left side issues because of an embolization, but mine are too deep to direct stick.
I hope you find relief!

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Hi, I had direct stick glue embolism about 5.5 years ago on my right foot. Recovery for me was very very slow. I was remember pain subsided significantly at about 6 month mark. I have been virtually pain free since then. It just started to give me some symptoms again 5 years later. I had to be patient and not over do it. Do seek out help to manage the pain but in my experience, I kept looking for the bright side. It took a while but it got there. I hope that it improves for you soon but don’t expect things overnight. Stay positive and remember this is a long term investment. Feel better soon.

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