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Median Arcuate Ligament Syndrome (MALS)
Digestive Health | Last Active: Jun 26 2:45pm | Replies (1189)Comment receiving replies
@jmorgs I am so sorry to hear what you and your daughter are going through, and it looks like you have a bit of rough journey ahead but you are not alone. This is an awesome group of people, many who have been through what you and your daughter are experiencing now. She sounds like she is a strong surgical candidate and that surgery could minimize her symptoms greatly. Because of her added diagnosis it is always a bit more challenging. Recovery for me was long, however I had an open surgery/bypass. I think many people have long recovery, it is much like having a complete hysterectomy for open surgery. 6-8 weeks of the initial recovery then it is slow going but progressive change of symptoms over a years time. It is a differ recovery in that you feel better after surgery, but your body takes time to adjust to having blood flow. Many people who have surgery ( who don't post here) are completely recovered and do well after surgery with no residual effects, so please keep that in mind when reading posts. I just like to mention that because it can be overwhelming with reading others experiences.
Replies to "@jmorgs I am so sorry to hear what you and your daughter are going through, and..."
Thank you for your prompt reply and I apologize for my very delayed response. It has been a rather hectic couple of weeks since my initial post. My daughter has since had and endoscopy, and a gastric emptying study, both test her GI doctor wanted done to rule out any other issues. In between the two she was also admitted to the hospital for a couple of days after being found unconscious by her roommate from severe dehydration/electrolyte imbalance from all of the vomiting. They had her on a full liquid diet with one soft food meal a day but since then have restricted her to full liquid with 3 protein shakes a day until she has her vascular surgery consult on October 12th. That feels like a long wait and a long time for her to be on such a restricted diet when she is already so small but between the liquid diet and the Zofran every eight hours she at least seems to be experiencing much less pain and nausea. While it sounds like the road ahead could still be an uphill battle at times I am thankful for a diagnosis that finally explains all of the pain/nausea she has had over the years. She is thankful too although currently very mentally and physically drained and really wanting to be able to eat solid foods again!
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"Many people who have surgery ( who don't post here) are completely recovered and do well after surgery with no residual effects"
That is an excellent point Kari, and good to keep in mind!
I am very early on in exploring MALS, but from my reading, it seems that the surgery is very successful for a lot of people. I also think if something is left untreated for a long time, as seems to be happen often with this diagnosis, secondary problems can develop, so those can continue to cause some problems.
And, as you point out, those who are fixed by it are out living life, not lying around on a Digestive Disorders forum on a beautiful Saturday afternoon (at least where I live) 🙂