Vascular Birthmarks Foundation Forum - View Single Post - AVM of Rt. hip,thigh pelvic & back
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Old 06-21-2007, 07:36 PM
tami403 tami403 is offline
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Hi. I am a 40 year old woman who has a AVM behind the left knee and one behind the hip. The one behind the knee is very extensive and is high flow. It was diagnosed 11 years ago - I have probably had embolization done 12-15 times or possible more, I've lost count already, and used a sclerosing agent twice. The last time did not go well. I ended up will tissue damage, which became dry gangarene which ended up with a psuedomonas infection - nice scar also. I got so sick, I have never be the same. Nothing seems to last long. I am from Canada and through all of this thedoctors and nurses didn't seem to recognize the pain that goes with it. I remember after my first embolization at the hospital laying in the bed almost screaming in pain, and they seemed to think that tylenol should cut it. At the moment I am waiting for a MRI on my knee. It has gotten so bad it barely holds my weight. I have never spoken to anyone who actually understands the pain and dealing with having the leg problems that go with it - veins, ulcers, longer legs, etc. I am currently fighting for disability as I can't work since the gangarene incident and was informed that the AVM could not be causing me any pain. The only reason I would have any pain was "mechanical pain caused by the left leg being longer which could be fixed by phyical therapy". What dipsticks, do they even know what an AVM is? I just found this site today, and almost cried when I read your post because someone knew what I was going through. I am sorry that any should feel this kind of pain.
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