Painful Venous Malformation Lower Left back - Vascular Birthmarks Foundation Forum
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Old 05-23-2013, 01:53 AM
jerilee.rose jerilee.rose is offline
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Default Painful Venous Malformation Lower Left back

I recall posting here years ago, and I luckily had a few years almost pain free, or at least it seemed manageable until the past 6 months. Here is my story.

I am a 35 year old woman in Calgary, Ab Canada. When I was 15, i started feeling a painful lump in the lower part of my back, jsut to the left of my spine. I had gone to doctors a few times, and I was diagnosed with a Lipoma ( benign fatty cyst). I never had any ultra sounds or MRI's, and eventually went into surgery at 16 years old and they removed a mass from my back. It was extremely painful. 2 years later, after a few cortisone injections, I was in pain again. Everytime i went to the doctor, they didn't know what to do, because I was diagnosed with a Lipoma, and they are not supposed to be painful.

Years went on, of going to see doctors and finally i went to a walk in clinic in immense pain when I was 26. The pain had spread across the lower part of my back, and was moving towards my hip area. The very kind doctor, asked me if I had ever had an MRI and sent me for my first one. I have had 4 MRI's since then, with and without dyes.

it was determined that I had a venous malformation. The only doctors in Calgary were at the Children's hospital VB clinic, and they had never seen this type in this location of the body before. Becuase it was so large by this point, surgery was not an option. They assessed me to see if sleriotherapy would be an option. After discussing this, they were not able to offer me any certain answers. Eg.. if i would be pain free, or if my range of mobility would be damaged, due to the location of it being at the base of my spine, moving out towards my hip.

The birthmark I have, is not visible to the eye. However, IT IS EXTREMELY PAINFUL AT TIMES... Where I cannot lay on my back, or my side. Sometimes it hurts to wear underwear, or pants, especially jeans and a belt. it hurts to walk, sit, laydown, and I cannot exercise.

I had related the pain to stress at times. However, as it is continuing to grow, and the pain is back full force, I am limited to the things i can do.

I called the VB clinic in calgary the other day, so have a revisit with the doctors, and possibly another MRI, in hopes some new research has come up in the past 5 years. I was informed that they no longer work with Adults, and will pull my file and try to refer me.

So, now, I am highly emotional, stressed, in immense pain, waiting again, to see if anything can help me.

I am curious if there is anyone in Alberta, or Calgary more specifically who is facing similar issues. I have no one to talk to who understands what this is like.

Wishing all you out there comfort, security and painless journeys.
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Old 10-09-2013, 06:37 PM
dancermom dancermom is offline
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Jerilee, have you written to Dr. Robert Rosen on this website to ask for his opinion? He may be able to advise you on treatment. Also, please join avmsurvivors.org and join the Canada group and the Non-Brain avms group. You will find plenty of people to talk to there. Martin Simons, Josee Dubois, or Karel Terbrugge are the Canadian doctors most frequently recommended by our members for your type of vm.
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