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.
15 year old son with capillary and lymphatic malformation of chest and spine