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| | | Forum Newbie
Group: Forum Members
Last Login: 6/12/2008 9:57:06 AM
Posts: 1, Visits: 3 |
| Good afternoon. My son has been dealing with what we thought was an Ankle - Tibia fracture / injury for the past year and one half. Each time, his obvious swelling was interpreted as inflammation from the injury. In April of this year, more definitive testing was performed. It was apparent from the Full Body Bone Scans that he presented with lesions in his Right Tibia, Right and Left Pelvis, and Right Femur. Biopsies were performed and thankfully, cancer was ruled out. After one month of pathology studies, doctors now conclude that we are dealing with Lymphangiomatosis.
Although these lesions actually grow bone as is obvious by the size variance between right and left Ankles, he is considered Asymptomatic at the moment because he does not present with pain, immobility and shows healthy signs. Periodic evaluation will take place to ensure no metastases.
Our concern from the literature available and the fact that little is known of the disease is the unknown.
Will this spread to other bone(s), soft tissues, respitory, etc. It appears that more significant and dangerous consequences occur the more prevalent the disease impacting respitory and upper body function.
Can anyone related to my sons condition, at least initially or during onset, resembling the same type of symptoms. I would like to know how their case has developed, the course of treatment, doctors and networks, etc.
Any information would be very helpful considering we are new to this initial diagnosis.
Thank you. Charles. |
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| | | Forum Member
Group: Administrators
Last Login: Today @ 2:57:14 PM
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| | Hi Charles, I can relate to what your son is going through. I broke my leg when I was 6 and they found a lesion in my right tibia. They did a bone scan and found I had one other lesion in my rib. They didn't diagnosis me for several years though as this was in the early 80's when they knew even less about lymphangiomatosis. When I broke my leg again in the same spot they scanned me again and found lesions throughout my whole skeleton. I have also had issues with my spleen, lungs and abdomen. Not everyone will have the same complications - every case is different in how it presents and severity. I would be happy to communicate with you more about my history if you think it would help. You can email me @ support@lgdalliance.org. Jana |
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