InstantForum.NET v4.1.4Lymphangiomatosis & Gorham's Disease Alliance Forumhttp://www.lgdalliance.org/forums/forum@lgdalliance.orgFri, 21 Nov 2008 09:18:55 GMT20http://www.lgdalliance.org/forums/Topic166-8-1.aspxHello,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.Wed, 17 Sep 2008 07:54:09 GMTnvsprgrlhttp://www.lgdalliance.org/forums/Topic126-8-1.aspxI am Jianguo Chen and father to my son who is 15 years old. This May he had had fever and diarrhea. After antibiotic treatment his fever subsided, but he still has abdominal pain. By ultrasound scanning, surprised the physicians, they found multilocular cysts in his introperitoneal, retroperitoneal and pelvic cavity. There are also cysts in his vertebral column by MR scanning. He experienced two biopsy and developed chylous ascites. Biopsy showed fibrosis and inflammation changes. Now ascites is absorbed. We are living in Denmark. The Phsicians and surgeons give diagnosis as lymphangiomatosis, but they do not know how to treat my son exactly. They plan to make operation to remove cysts first, but they are not sure about the operation itself, because it is the first time for them. This makes me extremely worry about the situation. I am deadly looking for suggestions, ideas, experience, or experts in this area who can provide the best treatment for my son. In short, all ideas are welcome. Thanks in advance. Desperate father and motherThu, 10 Jul 2008 02:53:02 GMTTianlanchenhttp://www.lgdalliance.org/forums/Topic115-8-1.aspxI'm wondering if anyone else has chronic abnormalities in lab results. Britt's white cell differential count is always out of line with low lymphocytes and high monocytes and/or eosinophils. She is anemic with normal serum iron levels. Her acute phase reactants are out of line, as well. These would be ESR (Sed rate), C-reactive protein (CRP), pre-albumin, and ferritin. Also, her magnesium level is low and will not budge no matter how much we add to her TPN.Thu, 26 Jun 2008 20:59:07 GMTlisakkrnhttp://www.lgdalliance.org/forums/Topic116-8-1.aspxBritt had a CT of her lungs Tuesday that revealed she has an old (meaning not acute) pulmonary embolism (blood clot) in one of the smaller arteries in her left lower lobe. It was not there 8 weeks ago on a prior CT. Anyone else had this sort of complication or blood clots in any vessel?Thu, 26 Jun 2008 21:10:43 GMTlisakkrnhttp://www.lgdalliance.org/forums/Topic81-8-1.aspxGood 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.Thu, 12 Jun 2008 09:57:29 GMTCharleshttp://www.lgdalliance.org/forums/Topic100-8-1.aspxWe all want to do everything we can for ourselves or our loved ones who have Lymphangiomatosis. With that being said, has anyone ever had any experience with Johns Hopkins in Baltimore? They are ranked number three as far as cancer hospitals, behind the Anderson Center in Houston and Memorial Sloan in New York. Since their are many similarities between LYMPH and cancer I was contemplating making a trip there in the near future just to pick their brains. If anyone of you have had any experience with Johns Hopkins can you share it with me or even better pass along a name of the doctor you saw there that would be great.Sat, 21 Jun 2008 18:47:23 GMTDanhttp://www.lgdalliance.org/forums/Topic53-8-1.aspxMy daughter is on alpha-interferon 2b (Intron A). Brittany has been on 3 million units per day for almost 4 months. She has had few side effects, but I see no convincing evidence that it is doing anything. The doctor says it will take at least 6 months before we see evidence it's working and she's determined to go the distance. It doesn't seem to be hurting anything so I'm willing to continue. We would like to know if anyone else has tried this drug and what are/were your experiences with it. Did it work? What dosage? How long before there was evidence the drug was working (or not)? How long did you take it and why did you stop? LisaWed, 28 May 2008 20:47:16 GMTlisakkrnhttp://www.lgdalliance.org/forums/Topic58-8-1.aspxHi,We found out my daughter has lymangiomatosis about 7 years ago. She is now 17 almost 18 years old. The doctors now want to perform surgery on her spine due to the fact that her curvature is at 70% and the tension on her spinal cord is too tight. Has anyone gone through or known anyone who has gone through spine surgery where they actually attached rods to the spine with the condition of lymphangiomatosis? What the doctors are trying to do is to keep the screws that connect the rods to the bone intact. Because of the softness or porous bone they are afraid the screws will not hold. Any information will be helpful. Her surgery is scheduled for June 23, 2008.Thank you,SharonThu, 29 May 2008 17:30:25 GMTSharonJhttp://www.lgdalliance.org/forums/Topic30-8-1.aspxClaire's doctors are currently investigating which medications to start her on to help with bone involvement. I was wondering which medications have worked or not worked for you? We are looking for a medication that will slow or stop the progression and/or stop the pain.Sun, 18 May 2008 18:58:01 GMTBeth M