Sorry this is going to be a long one!!
I was born with a venous malformation on my back, I first had an op at the age of 8 to try and find out what the painful lumps in my back were, they discovered the malformation which at that time no-one knew anything about. I then had an op age 13 to try and remove another part of the malformation as it had grown and was causing a painful swelling across the right side of my back and into the rib area. I bled alot but luckily did not need a transfusion. I have had 2 children, with each pregnancy I found the malformation grew alot more and had become more swollen, until in 2006 I decided I would look into getting somthing done about it, I was refered to London to an expert in this area, I had an mri which showed the malformation now affected the right erector spinae, lat dorsi into the rib area and into the bottom 2 lobes of the right plura. As so much muscle was now affected it was agreed just to try and remove some of the surface part of the lesion hoping to reduce some of swelling, At this point I should have turned around and not bothered. 4 months later I was booked in for my op. unfortunately I did not see my doc before the op, and when I came around in recovery I was told yes we got as much out as we could!!!!!!!!!!!!
I actually ended up having 22 pints of blood transfused a large part of the erector spinae was removed along with lat dorsi. since then the malformation is still a problem only now it has moved nearer the spinal area and I have a large swelling in that area near my spine. a year after the op I developed low pressure headaches (basically when im upright I get a Headache) they think I have a leak in my csf fluid in my spine, I have been suffering daily with these headaches for 2 years now basically the more I do the worse the head gets. Im sure the venous malformation has somthing to do with it. I had one blood patch to try and treat the headache but did not work, Ive been offered another blood patch but there are serious risks and if it is my vm causing it then it wont work anyway. My main concerns are that my vm seems to be slowly getting worse around the spinal area, my latest scan says the vm does not penetrat the spinal canal, but am really worried that this will changed, has anyone here had sclerotheraphy in this region of the back, Ive read a bit on this on the net I was never told about this kind of treatment when I went for my last op!!
I really would like to know risks with this treatment and if there is an expert in the uk in these matters, I really dont know what to do Ive waited over a year for someone to get back to me about perhaps this type of treatment in the uk but never seem to get anywhere!