Sclerotheraphy with csf leak? - Vascular Birthmarks Foundation Forum
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  #1  
Old 05-23-2011, 01:28 PM
Leece Leece is offline
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Default Sclerotheraphy with csf leak?

Slim chance someone may have some answers on this one but what the hell,
I have an extensive venous malformation across the right side of my back it affects a large area of the muscles and grows up the back of my right lung, Ive had 3 op's to reduce the Venous malformation. I had never heard of sclerotheraphy until a few years ago came across it on the net, I got referred to Middlesbrough in uk, to hope to get treatment with bleomycilin. Unfortunately I developed a headache in 2007 which they believe to be a leak of the csf fluid from around the spine. My problem is that I cannot get the sclerotheraphy treatment with bleomycilin whilst there is a risk of a csf fluid leak, as the sclerotheraphy treatment is toxic and cannot risk it going into the spinal area.
My question is, can they do sclerotherapy in just certain areas away from the spine, which may be possible with a csf leak or can another sclerotheraphy agent be use which would not be a risk, Anyone have any ideas or can recommend someone in the uk that does this, I am currently being treated in the Bristol area for the neurological side of things is there someone that specializes in this sclerotheraphy treatment near Bristol. I know surgery is no long an option, my last operation was not good and the venous malformation is now far too extensive and deep for this type of treatment. Running out of ideas.
Thanks x Leece
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  #2  
Old 05-23-2011, 10:22 PM
missy missy is offline
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Hi and welcome!

Try one of our experts:

http://birthmark.org/experts.php

I wish I had more to offer you. But the doctors are a good place to start asking.

Missy
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  #3  
Old 05-25-2011, 06:13 PM
Leece Leece is offline
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Thanks, Ive put my question to the experts. Hopefully they can help.
Leece x
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  #4  
Old 04-02-2012, 07:56 PM
heidi heidi is offline
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Default ?

Will you post here when you have heard from the doctor?
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  #5  
Old 06-24-2012, 01:20 PM
dancermom dancermom is offline
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Default UK AVM Awareness Group

Leece, at AVMSurvivors.org there is a UK group that might be able to give you some answers: http://www.avmsurvivors.org/group/uk...ource=activity

There is also a spinal AVF group, which might have information about spinal fluid leaks.
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