I sure can identify with you.. My symptoms are no way as awful as yours but they are awful. I have had many tests and procedures over the last 4 to 5 years and next week is my consult with a gastric surgeon and mals etc, specialist. I am hoping she can rid me of this curse. Best wishes to you.

how is life with a tube? gain weight back ? feel energy and can hydrate?

I have all the symptoms of MALS but not the radiology findings, so the vascular surgeon just dismissed me without any advice on how to figure out what is causing my pain. Since I had done my research, I insisted on seeing someone for a celiac plexus block. He put in a referral, but said it was unlikely they would do anything since it did not show on the MR Angiogram. HA! I saw the Interventional Radiologist and she said that happens all the time and she would do the CPB procedure. My symptoms started immediately post-op from an appendectomy. She said that the surgeon probably overinflated my abdomen during the procedure and that started the cycle of pain on the nerves which then created a whole host of other problems in addition to MALS symptoms. Her normal procedure is to set somebody up for the short-term block while they are awake on the table and if they get relief to do a longer-term block (just a couple of months) with ethanol while there. The problem is that since I have a low pain threshold I would never tolerate it while awake plus, my symptoms disappear when I'm laying down so I would not be able to tell her if it was effective. She therefore wants to go straight to the longer-term block with the ethanol under anesthesia on 07/16/24. Here's the issue. I realized after talking to her that this is simply a band-aid on the symptoms and not fixing the cause. You mentioned 3 different types of MALS, however I could not find any information on neurogenic MALS, I did not understand your description for the second type and the third is what all vascular surgeons look for with the J-hook which did not show on me. Can you please provide links to information about the first two since it would appear that mine probably falls under the type that effects the nerves without compression or stenosis of the celiac artery. I then want to go back to her to discuss all the options for permanent relief so she can help me advocate with my vascular surgeon. BTW, what type of MALS did you have? Thank you.

I hope you were able to get surgery and doing better. My 18 to daughter has all the same things 😞 We had MALS surgery and now waiting for SMAS surgery in September

It hurts like crap

Btw, I also have the trifecta so I get it.

THANK YOU FOR THIS! I’m flying to Jamaica on the 29th and I JUST got my central line put in the past Wednesday. I’m going to have to infuse for. 8 hours a day and the whole point of getting the central line put in was to get my life back. I was trying to figure out how to do this and I thought about people with feeding tubes because there aren’t ANY vids I can find about the right type of travel equipment for this. So, thank you again.

thanks for sharing <3 hope you're better now

What is the point in getting any block that lasts 12 hours ????

Thank you for sharing! I have one in a couple days for pancan! Im super nervous!

Excellent presentation. Thank you!

Getting mine in a couple of weeks...

Nice job explaining a complex condition. Thank you!

Great job explaining

I’m getting this done in 2 months and I’m terrified

I’m going in for my second one!! My Dr took the first one out too soon and i dropped an extreme amount of weight. I’m really frustrated with medical professionals saying procedures are painless when they AREN’T 😢

Thank you for sharing your story!! I had MALS surgery in August. I had a MTS stent placed in March 2021. I have NCS that needs addressed. And now suspected SMAS. These compressions are beasts!! I hate that there aren't many surgeons out there that know this stuff!!

Most probably I will do it soon, thanks for sharing your experience with us 😊 🇴🇲🤩

I am sorry that you have MALS I understand everything you’re going through I had a major surgery just a year ago I am retired it was really strange and a long journey just to find the problem for me it started in 2018 it was because I was doing too many set ups averaging 300 today all of a sudden one day a sip of tea it was like a bomb going off on me I couldn’t put anything in me so just after Christmas I think it’s December 28 I’m going for my second nerve block plexus, that help because all my nerves grew back and it’s compressing again I have extreme high blood pressure good luck with yours I hope you have best of success the biggest thing that I had learned was to be your own advocate because I went through several doctors only to find out that they missed the diagnosis for my radiograph back in 2018 the radiologist had mentioned in a four page report twice about the celiac compression nobody acted on it and I didn’t know what it was I learned all about it on KZfaq brought it up to my doctors went through all the tests some of those failed but after my first plexus nerve block and I had instant relief they knew it and I had the surgery good luck. From JSCOTT

Did Dr shoot you up thru stomach wall into the plexus nerve bundle? I get injected medicine in several areas.not just one site..my condition worsened past year..I keep morphine 30mg ir tabs handy as well...pain breaks thru alot...even with block..I've been diagnosed as very severe five years now..pancreas divism...chronic pancreatitis..

My gj tube placement was also extremely painful!

I have EDS and I’m pretty sure that my son has it and this. How did you get diagnosed?

im just curious have you been checked for EDS? I have all the same comorbid disorders as you and they are all highly associated with EDS!

Hi Hayley! My name is Chloe and I wanted to thank you for creating this video. I have multiple chronic illnesses and I am getting my GJ tube in a few weeks. I would love to hear more about your experience and if you have any other tips for pre and post op! Thanks!

I have both of these conditions as well as hEDS. You're a warrior! Just subscribed to your channel.