I was diagnosed with an AVM in my right calf when I was 10. Was born with an enlarged calf, and it progressed through the years, resulting in pain and constant aches. Had one removal attempt when I was 10 in 2000, embolization in 2001, and a third attempt in 2002 with a third of my muscle removed as well. Dr stated there was still a 25% chance of re-occurrence and I believe it has come back at this point. Looking for any others out there experiencing this as well. What were your treatment options at that point and any luck with surgical options?
It is my understanding that recurrence or regrowth of an AVM is rare. Be patient waiting for a response and we’ll do what we can to make this topic more visible.
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Katie, I have found that the embolized vessels are closed but then new collateral pathways emerge. The blood has to find a new way to move; sometimes smaller arteries/veins enlarge forming another VM, in my case. Often this new presention is not as bad; but very disappointing. I don't think of it technically of a "re-occurrence" because all my VMs were successfully shut down. Months of thrombosing with edema/pain leave that vein (in my case) closed shut, due to scar tissue.
One treatment that really helped the secomd time was RF (radio-frequency) of a small perforator vein.
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hi, katie
i also have a re-occuring AVM in the right hemisphere of my brain. i had the first one removed through surgery when i was 8 years old and the doctor told me the same percentage you got and 10 years later i have another one growing, he told me about 3 possible treatments. not sure if they will on your calf but there was one where they inserted glue and let the glue take care of it another was surgery and the last was radiostatic surgery which is what i chose.(they all have potential risk but try to ask your doctor about these options)
Thank you all for the updates/information regarding your own cases as well. I had my first baby back on March 29th of this year, and my surgeon had me get a scan after the birth due to pain still occurring in my leg. After my last visit the AVM had formed a new lesion in my Achilles Tendon, that’s given me some mobility issues as well. Going in next Wednesday for removal of it, and then repair of the tendon. Prayers for a fast recover with a 4 month old at home!
Hi Katie,
My brain AVM was discovered in 2006 when it bled (I was also 10 years old). It was treated with the Gamma Knife in 2007. In 2010 or 2011 (can’t remember), the MRI (without contrast) showed a problem area they had missed (even though the previous MRI–also without contrast–showed that the AVM was completely gone). After the discovery of the problem area, my surgeon requested an additional MRI with contrast, and then an angiogram. Both confirmed that two small areas of the AVM remained–each one only 0.5 mm by 2 mm in size. (I named the areas Earl and Pearl after a teacher I had–and disliked-- in semester one that ended up coming back to teach me again in semester two!!). Then my surgeon tried embolization in 2011 or 2012, but the angiogram while I was asleep for surgery showed that the vein did not feed directly to Earl and Pearl, so then I had the Gamma Knife again (in a low dose) in September 2012 (second week of grade 11!). All MRIs since have shown that the surgery was successful.
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