Lymphatic cyst

[Beth_B]

Hi, I was rushed in for an emergency operation 3 years ago due to severe abdominal pains (suspected abscess on my appendix) where a 20cm cyst was found in my abdomen. About 1liter was drained from it and it was found only to contain lymphocytes and nothing more serious. Since then it has grown back so I had drain 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. Does anyone have any suggestions or can relate to me?? Thanks!! :D

[rasburgi]

There is a doctor in Boston who specializes in lymphatic honeycomb cysts. They are very rare, but my niece was just born with one.  The treatment is non surgical and out patient.   The doctor works at Boston Harbor Hospital, I'm not positive that's the whole name.  Sorry I couldn't be more help.  But you can probably find out more by researching the internet for a hospital with that kind of name.  When I find out more from my niece''s treatment, I'll let you know.

[Beth_B]

Thanks for your message!!  :)
The consultant who I was under from the beginning has recently retired so the other week I saw a different consultant who has no clue what to do either! My original doctor did write to other people for advice and I went to see one cyst specialist (I am sure that's not the correct term) but he was used to dealing with cysts in limbs so the methods he used would not be suitable for me due to mine being located in my abdomen, which obviously carries more risk if things go wrong, chemicals leak etc - which is why sclerotherapy is not really an option. Other methods will not work due the my scar from the original operation reaching above my belly button, the structure of the cyst being honeycomb shaped (why draining it doesn't work) again the location of the cyst. Removing it surgically is obviously a (all be it severe) option. However they are very reluctant to do this as it obviously didn't work the first time. This was mainly due the the cyst membrane not being defined and it just fragmented when they tried to remove it. All the options seem to have a reason why they don't work!!

Can I also say I did read your journal and found it very interesting!!!
I am just finding it really hard to research any information that may relate to me.

[sweetpea03]

I would try to make another appointment and ask for a second opinion to see what the next doctor thinks about it. It could be a lymphatic malformation of some kind and they are difficult to treat, but there are a number of treatment options. You can talk about trying sclerotherapy on the 'cyst' and see how that works. Or they may want to try and remove the 'cyst' entirely, but these are things you need to discuss with your doctor. I have a journal on here written about lymphatic malformations that you can take a look at that is on my profile. Hope it all goes well.