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Old 04-22-2012, 08:19 PM   #1
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daughter has hemangioma on lower back

Hello everyone, new to this board. My daughter had her 2nd mri, which confirmed she has grown a second hemangioma on her T spine. its not involving the spine itself, its not connected to anything. We are consulting with a pediatric surgeon in a few weeks. Im hoping they remove these. My daughter complains of constant pain, if she leans up against even a soft couch. The hemangiomas are bruised looking, and here about a year ago, she only had one, then her body grew another one. They are actually separate from one another. Any one else have surgery for this, what is the recovery time, and how long will she be in for surgery? She is also cold all the time, and wondering if this is related to the hemangioma or not. Any help would be greatly appreciate.

God bless, and thank you...

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Old 05-26-2012, 08:27 PM   #2
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Re: daughter has hemangioma on lower back

I'm sorry your daughter is going through that! It must be terrible to see her suffer. I haven't had any experience with that myself, but wanted to wish you luck. There may be a different board that would be better to post this on, but I'm not sure which one. Take care and good luck to your daughter!!!
ACDF c4-5c5-6//Chronic pain neck & shoulder//Left knee menisectomies x3//Idiopathic Hypersomnia//Fibromyalgia//Pigment Dispersion Syndrome//etc...

Old 05-27-2012, 08:01 AM   #3
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Re: daughter has hemangioma on lower back

We've had a number of people here with hemangiomas on/in the vertebral bone and even one who had inside her spinal cord itself. As you know, they can grow almost anywhere and are a mass of blood vessels so many docs feel that since they are benign, you should leave them alone as the bleeding from removal can be life threatening. I have one that just started growing on my left arm....and I'm 60. Had one removed from my finger many years ago after it calcified.

But I guess the first questions I'd have for you are how old is your daughter and just what area is affected by the hemangioma? It almost sounds like you can see it so what is it attached to...bone, ligament, skin? I know from those who have had them growing inside the bone of a vertebra, they leave them alone. The lady with the spinal cord tumor had to have her's removed as it was inside and growing bigger. What they do to it often is decided by where it is and how much damage it might do should it not be removed.

I know it hurts when your child is in pain. My daughter was 7 when she got ITP, a disorder of platelets that made her bleed into her skin and joints. It hurt me more than it hurt her. But sometimes, we have to look at the long you relieve her pain now or let it go and hopefully it calcifies and can be removed without bleeding down the road?

I'm so sorry this has affected your family.

gentle hugs............Jenny

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Old 05-28-2012, 06:20 AM   #4
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Re: daughter has hemangioma on lower back

My dear thank you for the very appreciative note. They are going to remove them, because it is interfering with her posture, and is causing what may be now a permanent curvature to her back. The doctor seems to think it will be just fine. He said he is also going to create a fat pad in the area that he is removing, because it sits right on the verterbrae bones. They are within the first and second layers of tissue, so it's not connecting to any muscles, bones etc. He said with technology, she wont have too much bleeding. They may have to put a stint in to help with any drainage. He said she will be up and about within a week or two.

My daughter is the one who wants them out, she knows the risks, but the pain is unberable, and the doctor said these will not calcify,because there is too many blood supplying these areas. She is having her surgery in aug.

Many thanks, hugs

Old 05-28-2012, 06:21 AM   #5
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Re: daughter has hemangioma on lower back

thanks you for your well wishes post. We will pray that all goes well. hugs

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