← Return to Mesenteric Panniculitis or Sclerosing Mesenteritis

Discussion
BillyMac65 (@billymac65)

Mesenteric Panniculitis or Sclerosing Mesenteritis

Digestive Health | Last Active: 5 days ago | Replies (1399)

Comment receiving replies
@musicflowers4u

I am so sorry so many are in such pain with this illness. I count myself lucky. My pain began around 2009. Around five doctors (specialists in gastro, surgeons, primary, etc.) had consulted with over the years. Various ultrasounds and CR scans resulted in diagnosis of messenteric panniculitis. All of the doctors indicated MP to not be of any concern. Only in 2016 when I read my own report from a CT taken at a hospital ER when I drove myself there in great pain did I find out I needed a biopsy for enlarged lymph node in the mesentery. I sought out a doctor at a major hospital who considered himself knowledgeable in MP who did endoscopy on a lymph node which proved negative. I continued in pain. It was through a blog, and prayer, that I learned of Dr. Pardi and Dr. Alexander at Mayo Clinic in Rochester, MN. I consulted with Dr. Alexander who called in a specialty surgeon after an exploratory was my choice of three options. Dr. Kellogg and his team were at my bedside when I awoke from surgery. I was told they had removed three feet of small bowel, 12 tumors and 13 lymph nodes (six of which tested positive) for Stage IIIB Carcinoid Cancer. Dr. Alexander said although they usually would look for lymphoma in cases like mine, they are often surprised at a different outcome and so they were surprised. I was given names of oncologists to whom they would refer me for follow-up and I chose to go to Dana Farber Cancer Institute where I have blood work every six months and scans once a year. I have had CT and Octreotide shot and scan so far and so far no new cancer. So far no need for medication. I will be followed for a total of ten years. Although my other organs were scanned for metastasis and proved negative, my fatty liver scans are too obscure, so I am seeking the Gallium-68 scan next. Previously used elsewhere in the world for neuroendocrine tumors it is now available in the US. A blog, prayer, and the doctors at Mayo in MN saved my life. Had I not been my own health advocate and refused to accept other (local) surgeons claims that it was impossible to remove the lymph node in the very difficult location in the mesentery (Dr. Kellogg was able to remove that and more), only God knows what stage I would be at now. So I thank those Mayo doctors and my Lord God, and a blog. Dr. Alexander said messenteric panniculitis can be a symptom of an underlying illness, which was the status in my case. So, please, don’t give up. And know that my case was atypical. Colonoscopies do not usually find Carcinoid Cancer, I had stuck to a routine colonoscopy schedule. Most Carcinoid of the small bowel is found during an autopsy as most cases don’t present with pain until the cancer is far along as mine was. Do not quit seeking answers!

Jump to this post


Replies to "I am so sorry so many are in such pain with this illness. I count myself..."

@musicflowers4u

Hello, I just noticed in your post that you mentioned Carcinoid cancer. I wanted to take the opportunity to invite you to share in our NET discussion group. Here is the link to our NET discussion, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/tab/discussions/

Most of us feel like you do – we are fortunate that this rare disorder was found, one way or the other. One word of caution, though, I see that you were told to continue the follow up for 10 years, however, on my 11th year (after my 2nd surgery) I had another NET appear – it is better to keep the surveillance going longer than necessary to ensure that you stay free from NETs.

I would be interested in hearing about the results of the Gallium-68 when you have it.

I look forward to hearing from you again.

Teresa

  Request Appointment