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Leece 05-01-2009 09:12 AM

My Story
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!

sweet pea 05-09-2009 06:15 AM

I'm not sure about sclerotherapy treatments, but I do know a girl in the UK getting injections with another drug to get rid of her malformation. She goes to the James Cook Hospital for treatment, I think. I'm not positive on the details, but I can ask to find out. hope you find some better treatment options. keep getting more opinions and don't just stick with one doctor, so you know your options and can be positive of what you can do.

Leece 05-16-2009 11:12 AM

Thank you sweet pea for this info. put james cook into the net and found out that since nov 2008 they have been treating vascular malformations by bleomyoin injections. I will be requesting that my GP refers me here to see Tobian Muir to see if they can help me. They have treated several people who were told that nothing coulds be done for them, but having the injections has really helped with their symptoms. THANK YOU again so much I have somthing back which I hav'nt had for a long time HOPE. XXX
In case anyone else need this info.The James Cook Hospital Birthmark Clinic in UK Tel: 01642 854216 for Tobian Muir Secretary. From what Ive read dated Nov 2008) they seem to be the only Hospital in the Uk that treats vm's with this type of treatment!! unless other hospitals have since started to do it as well. Thank you.

sweet pea 05-31-2009 03:38 AM

No problem, glad I can help a little. And that is the treatment she is getting, the bleomyoin injections. So far her malformation has gone down a little, so it is working. Good luck with it all.

becbec 500 06-01-2009 01:01 AM

Hello Leece,

Sorry to hear youhave had such a bad time with your venous malformation. Sweet pea has mentioned bleomycin treatment offered by Tobian Muir at the james cook. My daughter has a venous malformation on her lip and has been recieving this treatment. I'm not sure who sweet pea is talking about but it may be my daughter as we were featured on the news in relation to this treatment. Tobian Muir is fantastic. He is extremely knowledgable on these birthmarks and is DEFINATELY worth going to see. We don't live anywhere near this hospital but I got my gp to refer my daughter. She has had 4 treatments and her venous malformation has all but gone. Before seeing Tobian Muir we were given all sorts of information by doctors which was basically wrong. There are very few side affects to this treatment and the success rate is high. I cannot recomend seeing him highly enough. Have you got your gp to refer you yet?

Min 06-03-2009 01:43 PM

Hi Leece,
thinking of you, hope you get better.

Leece 06-04-2009 09:24 AM

Referred to James Cook Hospital
Ive been to my Gp and he said he will refer me, but I phoned James cook Hospital and they still have not heard anything yet, Ill give them another week then get in contact with my Gp again if nothing starts to happen. Are you in the Bristol area only I saw some news articles, on a little girl with a venous malformation on her lip which they treated at the james cook hospital, Is this you?

becbec 500 06-05-2009 11:27 PM

Yes, we live in the bristol area and the little girl with the vascular malformation, or more specifically venous malformation, on her lip who was featured in the news article is my daughter. I'm sure you will get an appointment soon as we didn't have to wait long for ours once he had the referal. Although I understand it must be really frustrating for you when it feels like you are almost close to seeing someone who can help you. I had a real battle to get my gp to refer my daughter and ending up getting the Patient Advisory Liason Service (PALS) involved. After a bit of a battle they made the referal, but I can remember how stressful it was waiting for it. You will hopefully not be disapointed when you get to see Tobian Muir as I don't think there is a more knowledgable doctor on these birthmarks in the country (he is also very nice).
My daughter had her final treatment last week and the birthmark is gone. Her lip looks absolutely perfect (no scars).

By the way I spoke to Tobian Muir last week and he said as of yet his is still the only clinic in the uk offering this treatment, although he had done training with doctors at Birmingham children's hospital so hopefully the treatment will be offered there soon.

Leece 06-06-2009 09:43 AM

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.

destinysfool 07-22-2009 10:38 PM

Mr Muir, what a guy!!!
My baby daughter has also been treated by Mr Muir. At Christmas her eye was almost completely shut, due to the hemangioma growing under her eye-lid. In January we began the treatment with Mr Muir and after 3 treatments, it's all but gone. she can see perfectly. I cannot tell you how amazing this man is!
We live in Devon, it's a long drive to Middlesbrough, but entirely worth it! I hope anyone reading this looking for help or advice, will be encouraged to contact him. He has changed our lives. :)

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