Anyone had any experience with Pre-Renal Para aortic Lymphangiomyoma???

Hi I am new here I have lots of questions and wanting to see if anyone with any similarities?

I am 34 years old and diagnosed 1 1/2 years ago with Pre-Renal para Aortic Lymphangioma. I did have it removed in May 2009 (laproscopic) it measured appoximatley 4cm. My symptoms were abdominal pain/tenderness, nausea, fatique and dizziness.
After resection of benign tumor symptoms seemed to be gone. But in January 2010 symptoms gradually started coming back and a consistantly getting worse! Somedays the nausea and dizziness are unbearable. After a new CT scan the tumor is back at 4cm again 1 year later...I saw a General Surgeon again last week that told me that there is NO way the nausea is coming from the tumor and he doesn't suggest removing it again just watch it grow. Anyone familiar with this type of Lymphangioma?????

Hi there, are you still active on this post?

I noticed that noone replied. No wonder given how rare Lymphangiomyomas are!? Being so rare it is hard to find much useful data and treatments are not well known. It seems studies are focused on Lymphangiomyomas in people with Lymphangiomyomatosis or other primary issues.

Mine was much larger and not para-aortic, (lower abdomen instead) but I experienced discomfort and symptoms that worsened before surgery. That alleviated some of the issues. I was lucky to have leading surgeons and doctors. Given that this benign tumor is slow growing, the "wait and watch" treatment method is recommended. And because they are lymphatic was told mine might probably fill back out to that size (wasn't removed). I'm told they prefer not to operate unless organs are being affected or it is growing so large that it impacts on other things, and by itself Lymphangiomyoma is not as worrisome. Obviously it's not ideal but at least it's not malignant.

I have had times where I felt nausea, tiredness, tender glands, abdominal discomfort/pain, swollen bits. I have a weakened immune system as it is and believe this made it worse. I'm posting this in case it helps.

Personally I've noticed that doing activity (such as regular stretching, walking or exercise) and staying hydrated by drinking lots of clear spring/filtered water (plain) helps lessen the effect of such things during times when I've felt the above. I assume it is because my lymph system is clear, working and cleaned out - by the water and activity. Obviously we aren't sure, but I could sometimes attribute my nausea to when I felt more tender - I've wondered if it was because the lymph flow was being a bit blocked by the tumour and in turn making me feel sick. You know, a little toxic. I never usually get nauseated from anything else.

I notice if it feels more sluggish then I sometimes experience more of those symptoms when I have been stuck in bed/ill and not as active. Also the tumor area sometimes feels more swollen or something later in the day and when getting period. Eating healthy (fresh foods) and trying to do things that promote healthy lymph and good lymph flow seem to be the things that have helped me the most in managing it.

I find that if I pace myself the dizziness is easier to manage. By that i mean not overdoing things when i feel dizzy. How regularly do you get dizzy / nausea these days? Do you have any other underlying health issues? What is the latest on your tumor/health?

Hoping it's not affecting you as much and you get this post :)