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Old Nov 24, 2006, 05:58 AM
sabik sabik is offline
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Join Date: Nov 2006
Location: Saskatchewan Canada
Posts: 2
Lymphatic Cyst

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.
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Old Dec 13, 2007, 12:34 AM
joebtisme joebtisme is offline
Junior Member
Join Date: Dec 2007
Posts: 3

im sorry but I dont think anyone in this entire site is qualified to answer that question if that is true you said about only 5 people in the world? well why dont you google and see what you can find in thoughs five people who had this issue hope this doesnt become a problem for you

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Old Dec 13, 2007, 08:25 AM
sabik sabik is offline
Junior Member
Join Date: Nov 2006
Location: Saskatchewan Canada
Posts: 2

Hey Joseph,

Thanks for your reply.

I was told fifth person in Canadian medical history which is very rare in itself.

Thanks to my diligence about monitoring this condition, I recently found out that there is another cyst growing in my abdomen. It is 1" across at this point. From the research I have done, this was no surprise. People with lymphodema usually have this happen. I have had a CAT scan and ultrasound to try to determine what it has attached itself to.

I have done numerous Google searches with multiple keywords (which is actually how I found this site) as well as searches on other search engines. I do also go back and search every few months to see if new info is available. The wonders of the internet!!
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Old Aug 16, 2011, 11:59 AM
Bethan Bethan is offline
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Join Date: Aug 2011
Posts: 1
Hi Sabik,
I see that you posted your original story on here a few years ago, however, I was wondering if you could help me? Your story has a few similarities to mine!
I was also wondering since your original post, has the lymphatic cyst come back? I hope your arthritis hasn't developed much further either!!

I am 19 years old and 3 years ago I was rushed in for an emergency operation due to severe abdominal pains (suspected abscess on my appendix). A 20cm cyst was found in my abdomen and around 1.5 liters drained from it. It was found only to contain lymphocytes and nothing more serious. Since then it has grown back so I had a few drains fitted under CT scan. This did not work due to the structure of the cyst. It has since grown even bigger and I often get stomach pains. The doctors do not know what to do with me - they are unsure of the specificity of the cyst so have gone from referring to it as a 'pelvic cyst' to a 'lymphatic cyst' and have no idea how to treat it! I have spoken to several different consultants and no one is any wiser. All the usual treatments won't work for one reason or another.
I am trying to do some research (which led me to your post) but am finding it very difficult!!!
I hope you can help!
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