Well, wasn't expecting that!
It seems to just get funnier by the minute. It was just a routine appointment to discuss my results of breath testing but my Gastroenterologist decided to do a physical exam as part of my appointment. He described my abdominal pain as 'diffuse' and listened to my GI sounds with a stethoscope., it seems he might of heard an abdominal bruit and had an idea? It wasn't till I spotted he had referred to it in the clinical notes after the MRI that I realised it might actually be true!
I might have a MALS. Median Arcuate Ligament Syndrome, otherwise known as Celiac Artery Compression Syndrome, Celiac Axis Syndrome or Dunbar Syndrome.
I had heard of this condition before as a few of my EDS group have battled severe cases and had a rough journey leading to major surgeries. Wasn't expecting to read this in the outcomes of my MRI though. I did wonder why I was doinf breathing protocols however.
Apparent narrowing of proximal coeliac trunk raises the possibility of median acute ligament syndrome, however accurate assessment is limited due to spatial resolution and non-dedicated sequence. If required, ultrasound can be considered to further evaluate.
So Tuesday im off for a Doppler Ultrasound with more breathing protocols to test the pressure of blood flow and presumably check the blood flow to the organs that may be affected which are a portion of my stomach, my spleen and my liver. I do also hope to confirm if my transverse colon is in fact in my lower abdomen which apparently is called a U-shape. This would explain the very low pain I get a few hours after eating. I'm sure all will be revealed once they have the whole picture. I cant for the life of my think what other scans they could do that they haven't already but apparently there are a few.
Update to come with results from my Ultrasound. Hoping that its conclusive and I don't have to spend more time waiting for a result. Even so, the only fix is surgery, laparoscopic or open... and finding a specialised vascular surgeon, so really i'm hoping its a no, but prepared for a yes. There is really nothing else that could possible top an artery compression for me but suppose its early days yet.
