My paternal grandfather, uncle, and father have all had AVMs, so it's in the family. I was born with a very large AVM on the bottom of my left foot. At birth it was slightly smaller than an egg. At nine months, they operated and attempted to remove it and failed, so when I was two years old, they tried again and failed.
There is another large AVM in my left knee, one in my right lower abdomen, one in my right jaw, and one on the back of my skull on the right hand side. During puberty, the AVMs in my left leg and jaw flared and were very painful. This culminated in several doctor's visits, including a trip to the Mayo Clinic. We were told that there was nothing to be done about my left foot because the AVM had grown so large it was inoperable. At the time, we were also told there was little to be done about the AVM in my knee.
I'm 23 years old now, female, and have been living without too many problems until these past three months. Again, the AVMs in my left leg have become increasingly painful, to the point where I have difficulty walking sometimes. The AVM in my left foot also seems to have spread up to my ankle. The worst times are in the morning, when I first get up, but any time after I stand from a period of inactivity is also painful. They also ache dully when I simply sit. I've tried a pressure wrap for them, but to little effect. I'm not sure if it's activity or inactivity that's making them worse. I've been doing a serious yoga regimen since March of 2012, and my commute to work is about a mile walk. I don't run or do any cardio.
This is all complicated by the fact that I'm currently living in Japan. What I'm asking is if anyone has any suggestions for long-term pain management. I have a limited supply of pain killers from the States, and I have over-the-counter pain killers from Japanese pharmacies. Other than that, I would dearly love to hear any suggestions. Thank you very much.
Since you are not in your own country, you can visit a local doctor and ask for a prescription of pain killers. These can be NSAIDs or any other drug. Fentanyl patch can be tried for long term pain relief. Other than this wear comfortable shoes. You can also wear compression stockings. These help push blood out of the AVM and helps dull the pain. Take care!
Hello. I also have a very painful AVM. All my life I was under the belief that they were varicose veins only. Turns out, I have my entire lower left leg with AVM and varicose veins. Needless to say, I am in constant pain. I have gone to different specialist and I have gotten the same response: cannot be fixed. I am managing my pain (somewhat) with the following:
- Swimming (although at the beginning is painful, it gets releived with time)
- I have put two big books under my mattress to sleep with my legs elevated
- Compression stockings pretty much all the time.
The compression stockings have definitely made it better.
Like you, I used to wake up with pain. Elevating the mattress did the trick.
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