Vascular Birthmarks Foundation Forum

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-   -   New here, son has internal malformation (

SharonD 10-09-2010 03:52 PM

New here, son has internal malformation
Hello, glad to have finally found this forum. I have been searching for years to find help and support.

Not sure where my son's story belongs in this forum, we have been given so many different diagnosis but the short story is he was born with a mass in his chest it was removed at 3 months, we were told it was a hemangioma. Grew back a few years later and I was told it was inoperable because it was too involved with his spine. We monitored it for years through an annual MRI. Last year we found that it was eroding the dura, tried numerous procedures to correct the problem, he was leaking CSF and losing sensation in his fingers, we were left with no option but to operate. December 10, 2009 was a day that changed our lives forever.

The surgery corrected the leak but left him a paraplegic. He has been in a wheelchair for almost 1 year now, he is working so hard in therapy to get function back in his lower body and the malformation is still there.

It wasnt until recently that I finally found a dr that had some knowledge of his condition which she says is a capillary and lymphatic malformation. We are now in her care and she sent me to this gorup.

Is there a group or specialized resource for families with internal malformations? Our needs are much different than those with external and skin malformations. Thanks for any help you can provide.

missy 10-10-2010 02:54 PM

Hi and welcome Sharon!

What a story. I'm so very sorry that your son and family have gone through this. Right now, I do not know of a group or resource for you, but I will write to Dr. Linda... she knows so many people that she might know of someone who can help support you.

In the meantime, we're glad to be here for you, even though you will have to educate us on this condition.

I'll write to Dr. Linda this morning... but she won't get back to me until next week sometime. Our conference was this past weekend, so she's probably recovering from Post Event Trauma!! LOL!!


SharonD 10-10-2010 06:21 PM

Thanks for the response Missy! I will be looking forward to hearing from Dr Linda and if hse has any resources to share with us.

Hope the conference was a success, maybe I can attend next year and share our story. Who knows, it may pave the way for someone coming behind us.

missy 10-11-2010 01:36 AM

You will hear from her sooner rather than later... apparently, she handles post event stress better than I!



Aolmstead 10-17-2010 08:12 PM

hi Sharon,

i was compelled to write because i too have a daughter (16mths old) who was dignosed with LM macro initially on her Left neck. Now through MRI's, the cyst remains large deep down her chest bone. i am so worried and seeking medical interventional radiologist either locally or in Japan. I've done research and theres so many mixed reviews....have you heard of percutaneous embolization?
you and your family are so brave....i'll be praying for your strength and your son's courage....god bless..

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