Vascular Birthmarks Foundation Forum - View Single Post - My Story
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Old 06-06-2009, 09:43 AM
Leece Leece is offline
Junior Member
Join Date: Apr 2009
Posts: 14

Thankyou for your reply, such good news that your daughter has received treatment which has actually worked. It is so good to hear from someone else that a particulat treatment and doctor knows what they are doing, After my last experience I am nervous about any treatments but have got to the point in my life, that it is now so affected by this malformation I have got to try and do somthing. I just wish I had known about this type of treatment earlier, I think so many doctors can try to help with these malformations but simply do not know enough about them, but blindly go ahead leaving many of us in a worse situation. When I had my last op. I really believed my surgeon knew what he was doing, I went ahead with the op. thinking only the surface part of the malformation was going to be removed I knew all the muscles were affected but my surgeon had reassured me that this was not a problem and only the surface area was going to be removed. The area removed was huge. I was also told at that time I would make a full recovery and all would be fine!! wish I knew then what I do now. I have headaches all the time (they only stop when I lye down) Spinal fluid leak possibly cause by vm, and my back has become so painful the discolouration has spread, that familiar bluish stilton look is now across quarter of the right side of my back and is continuing to get worse, but what I am most worried about is the swelling right near the spine which has a large protuding vein, Its this bit I think could be causing the spinal fluid leak. I just really really hope that this injection treatment can help even if it only prevents it getting any worse. Thankyou again for your replies, Im not that far from you myself in Sherborne Dorset. I may need to pick your brains on best way to travel to James cook hospital, as its so far, Thanks again Leece.
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