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| | | Forum Newbie
Group: Forum Members
Last Login: 9/18/2008 11:07:17 AM
Posts: 1, Visits: 5 |
| Hello,
I am a 30 year old female and was diagnosed last year with Lymphangioma. However, because there were multiple, from my pelvis to my diaphragm, I'm thinking it is actually Lymphangiomatosis.
I had a major surgery last September which removed my lymph system from the left side of my abdomen. 3 months later, a CT scan showed some residual lymphangioma. Another 5 months, and it had grown to the size of a softball. I had a second surgery in June in hopes to remove it all and be done with this for good, however I just had another CT, and it shows that I have 2 masses left, one encompassing my aorta, and the other in the small bowel mesentary. I am a marathon / ultra-marathon runner, and currently running 40 miles a week. Does any one have any suggestions as to how to deal with this disease? Is the only option surgical excision? Will I have to have surgery every year, 5 years, 10 years, etc? Is there any added concern knowing that this encompasses the aorta in my abdomen?
Thanks for all your help. |
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| | | Forum Member
Group: Administrators
Last Login: Yesterday @ 2:57:14 PM
Posts: 26, Visits: 621 |
| | Hi and welcome to the LGD Alliance Forum. I'm Jana, the director of patient support. I'm going to send you and email to your personal address you used to register with the forum with some specific questions - to help you as best as I can. I can tell you that there is no typical presentation for lymphangiomatosis. I've spoken with many patients and caregivers or patients and their symptoms vary widely from person to person. Some are treated surgically, some medically - this also depends on the area affected, the doctor and the severity of the disease. Determining if it is in fact a diffuse lymphatic malformation - like lymphangiomatosis is very important. If it is, it can appear in any part of the body at any given time with the exception of the central nervous system. In my case - I have it in the bones, abdominal area, spleen, and lungs. I'll be sending you an email from support@lgdalliance.org - or feel free to email me there too at any time. Jana |
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