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SMAS vs duodenal malrotation

Posted by kjaffee @kjaffee, May 11, 2022

Hello,
My last post under SMAS had no reply, so I will try again. On 5/25 I will be having a diagnostic laparoscopy in order to determine a diagnosis for my gut issues. I was diagnosed with SMAS in May 2020. Very invasive surgery was suggested which I did not want, especially in a pandemic. Subsequent CT in 11/21 showed duodenal malrotation with no sign of SMAS because I have "A very mobile duodenum". Since imaging won't provide the answer, hopefully laparoscopy will. This is an extremely rare situation, to have two such rare diagnoses. Does anyone have any input for me? I have been told by a gastroenterologist that I must get the malrotation fixed ASAP as it can lead to an " emergency surgical situation quickly."

Interested in more discussions like this? Go to the Digestive Health Support Group.

Amanda Burnett | @amandaa | Jun 16, 2022

@jmmb, @jenny42104, @lasirvent, @kimh Thought I would let you know about @kjaffee 's post above!

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Teresa, Volunteer Mentor | @hopeful33250 | Jun 17, 2022
In reply to @kjaffee "I would like my fellow patients to know that there is a new Foundation that has..." + (show)
@kjaffee

I would like my fellow patients to know that there is a new Foundation that has been formed to support SMAS patients and their caregivers. I have previously posted under the title "SMAS vs duodenal malrotation". Please Google smasfoundation.org. The Foundation was started by an SMAS patient and her friends and family, and her GI specialist is on the Board. I found this organization while researching SMAS online. The Foundation's mission is to promote awareness of this rare condition, to contribute to research and development for finding treatments, and also to pursue funding to achieve these goals.

I was helped by the Foundation during a discussion with their GI MD advisor, who was very supportive and who encouraged me to have a diagnostic laparoscopy ASAP in order to determine my correct diagnosis for appropriate treatment. I followed his advice and found the answers for which I had been searching for years.

These people are very compassionate and they are good listeners! Check out their site, smasfoundation.org.

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@kjaffee,

I am so pleased to hear that you found a listening ear at the SMAS Foundation! As this is a rare condition, does the Foundation also lists doctors who specialize in this disorder?

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