InstantForum.NET v4.1.4Lymphangiomatosis & Gorham's Disease Alliance Forumhttp://www.lgdalliance.org/forums/forum@lgdalliance.orgFri, 21 Nov 2008 09:25:59 GMT20http://www.lgdalliance.org/forums/Topic103-23-1.aspxClaire has profound hearing loss in her left ear (her skull and left side of the face are involved). We were just informed that her eye pressure on the left side was high at her last eye appointment. The doctor's don't seem to know if this is Lymphangiomatosis related or not. She also needed glasses for near sightedness but were the same on both sides. Her left eye does appear to slightly 'bulge" as does much of her left side of her face. Has anyone else had vision or hear issues, especially increased eye pressure due to the Lymphangiomatosis?Tue, 24 Jun 2008 22:25:15 GMTBeth Mhttp://www.lgdalliance.org/forums/Topic148-23-1.aspxI've had headaches ever since I can remember. They started when I was about 8 or 9. They've never said that they're because of my disease, but I do have lesions scattered throughout my skull and spine. After talking with a lot of patients, it seems like this is a common thread that many of us share.Tue, 12 Aug 2008 07:32:39 GMTJaynahttp://www.lgdalliance.org/forums/Topic17-23-1.aspxI've had abdominal acscites or what they call "loculated pockets of fluid" in the peritoneal cavity for over 5 years. Though it is not progressing agressively, it is slowly causing me to have a bigger belly. Has anyone else experienced this?Fri, 16 May 2008 21:59:34 GMTJaynahttp://www.lgdalliance.org/forums/Topic111-23-1.aspxMy daughter has been diagnosed with both Gorham's and has lymphangiomas in her chest cavity. She has always been extremely thin and during her first hospitalization she lost 10 lbs and has not been able to put it all back on. I've heard others mention about being thin and I'm wondering if there is any correlation between weight and both of these disease processes. Are others who are dealing with this have issues keeping weight on and/or are very thin?Thu, 26 Jun 2008 15:31:25 GMTjdahlsonhttp://www.lgdalliance.org/forums/Topic54-23-1.aspxThere is an individual with lesions in his hip bone and femur and he's currently experiencing pain and swelling around the joint. He also has macro and micro soft tissue lesions so they're not sure about the source of the fluid. Has anyone experienced swelling around a skeletal lesion or been treated for this?Thu, 29 May 2008 05:38:14 GMTJayna