Lymphatic Cyst

[sabik]

Hi, I had a 14cm (6") wide lymphatic cyst removed from my abdomen in May 2005. It had a litre of fluid in it. Until it started pressing on my large colon and causing complete blockage of my digestive system, I didn't even know it was there. As far as they understand, this cyst had been growing inside me since I was a fetis. I was told by the surgeon that I am only the fifth person in Canadian history to have this type of cyst. From the reading and research I have done so far, I have found out it can also grow back if not removed completely. I hope not!! 36 staples was enough. As soon as I got that tidbit of information, it was down to the doctor to educate him about this and insist on an ultrasound. I will now have one every six months for a few years to ensure there is no regrowth. I found this site and am in search of information. This condition is so rare that there is very little info out there. If anyone has any info to pass along, I welcome it. I am 43 years old and since the surgery, I am developing arthritis. Is it old age? a complication of the lymphatic system brought on by the surgery? or removal of the cyst? Now I'm wondering what other possible complications I should be watching for. So here I am on a quest for knowledge anywhere I can get it. To complicate things, I have epilepsy so my memory is a major issue. This means that I have to keep rereading to remind myself of what I have learned.

I do want to emphasize what I have read from others here..... YOU are your own health care practitioner; your surgeon, doctor, therapist, etc is simply an educated consultant. I know it is difficult when you are not feeling well. Do not accept complacency, you must stand up and insist on getting help. If this means going to a different doctor - GO! Health care is big business and a lucrative career. Some people see it strictly as a job and leave the "care" part out. They see patients like they are on an assembly line and don't really "examine" or treat their patient. Do your research, ask questions and seek more than one opinion. You can save yourself a lot of grief, pain, suffering and maybe even possibly save your own life.

I really feel for all you people with this horrible condition called lymphedema. It sounds absolutely torturous. I am starting to see all the devastating things that the lymphatic system can do if not working properly and it's a scary thing.

Take care, keep your chin up and thanks for any info.