@lmtuska, Nice to meet you! I have had 2 MALS surgeries done at Mayo, and would be happy to share any information that would be helpful. Mals in the pediatric population may be a bit different than the adult population. My experience is a bit different as I have an underlying vascular disease. There are two approaches to MALS surgery, laparoscopic and open. I would recommend asking about the pros and cons of both. It sounds like you have opted for the open approach. The open surgery is a long recovery time, for me it was at least a year. This is a small list of things that helped me:

Open MALS Helpful Hints

• No perfume, lotion, hairspray, fabric softener (Smells really bothered me after surgery)

• Needs: 1 size larger underwear and socks, slip on shoes
Loose fitting comfy yoga pants
Undershirt soft to protect clothes from rubbing against the incision

• Several travel size pillows

• Wash everything in dreft before using (My skin was sensitive)

• Unscented lotion for back rubs

• Ice pack help for back pain

• Electronic chair (If you can afford purchasing one, I highly recommend it) Great for sleeping in the first few months or more.

• Foods malt o meal good, pudding, white toast, popsicle, anything easy to digest

• Mask and headphones or ear plugs

• Something from home, small, a stuffed animal anything to keep with you

• Eat slow, very slow If you think you are eating slow eat even slower. Advance diet slowly, VERY SMALL PORTIONS. Use your iPhone during dinner to keep you entertained, yes you should be eating that slow. Eat 1/2 of what you think you can eat. After surgery, there is no longer post prandial pain and your body is malnourished so it is easy to over eat and the fact you want to eat is an amazing feeling in itself. 

Hello @kariulrich,
Thank you so much for all of the information. We are so new to all of this. The biggest identifying piece to our puzzle was the doppler ultrasound at 414+ velocity and then the CT-A Scan. We look forward to meeting with Mayo, discussing our options and learning the pros & cons for open vs. lap surgery. The difficult part is she is living on an NJ Tube, due to the pain and nausea when eating. We are finding hope each day hearing others' stories. Were you able to eat again after the surgeries?

I am glad you will be going to Mayo, and yes I was able to eat again after the surgery. It was a big adjustment, because I had not post prandial pain and I would over do it. When you over eat too fast it gives you bowel issues (diarrhea), so be prepared to have her take things slow. Have been pain free for over a year, and I have gained back all the weight I had lost. I was fortunate not to have a NG tube, but my diet before the surgery left me malnourished. I could not tolerate food, but would drink sips of ensure or bites of a cookie through out the day. I called it the cookie diet because I could only tolerate carbs. Please tell your daughter I am thinking of her and we are here for both of you! @lmtuska are you coming from out of state, or are you in Minnesota? Will you be going to the clinic first or hospital? The reason I ask is because if you will be at the clinic for appointments and additional tests, your daughter may become very tired in between. There are patient quite rooms at the clinic on the subway level down the hall from the information desks. I would use them a lot, they have reclining chair and blankets and the rooms are kept dim. Hang in there!

@kariulrich Hello, I'm about to have a CT-A to determine if I have MALS. Do you mind if I ask why you chose the open procedure vs. laparoscopic?

Hi @evrose23! After discussion with my vascular surgeon, open procedure was the only option for me. I have an underlying vascular disease and laporoscopic would have put me at a greater risk. I believe that there is better visualization in the open procedure vs laparoscopic, and it really depends on the patient's age and how long they have been diagnosed. Children are a whole different story, and laparoscopic seems to have a great success rate. For me, my artery did not open up after the ligament release so I had to have a bypass done. Let me know how your CTA goes!

What doctor at mayo do you see? Was it in Jacksonville fl?

Hi Lisa,
My 18 yo daughter was recently preliminarily diagnosed with MALS after several years of testing and pain. She also has a congenital anomaly of the anatomy of her duodenum. She has always been slender, but a couple of years ago began to have issues with vomiting, significant pain, and has lost a significant amount of weight. She is 5'7" and hovers between 85-90 pounds. She is in pain all the time, and her doctor has said she will need to have an NJ tube if she loses more weight. She is headed away to college in a few weeks, so I am even more concerned since I won't be with her.
We have been seeing doctors at Johns Hopkins All Children's Hospital in Florida, but I am thinking we need to go to a team with significant experience in MALS. Do you have any insight you could share? Thank you in advance!!