I'm not sure if you will reply to this since I am a bit late, but my doctor thinks that I have MALS, but when you had MALS did you have bad intestinal pain along with stomach pain or just plain stomach pain? Because I have both, yet the stomach pain could be caused by MALS. My doctor wasn't sure if the intestinal pain was related, they didn't really specify.

Hi Kyra! I am more than happy to reply to your comment. I did have some intestinal pain, but I also had some other GI things going on like undiagnosed Celiac Disease and SIBO. Here is my video on SIBO kzfaq.info/get/bejne/iJaTpLSq0K-znnU.html (I don't have one for Celiac disease, yet). SIBO can cause intestional pain, but it could also have been just from the MALS. SIBO is also relatively easy to treat (just oral antibiotics). If it were me, I would treat the MALS first (once you get a confirmed diagnosis) and see if the intestinal pain resolves and if not, then continue to look for a cause for them. I hope that helps and makes sense! Let me know if you have any other questions! Many Hugs 💜 Alyssa

Alyssa Layne Okay thank you so much! I did a SIBO breath test and luckily it came back negative but they did find I had candida overgrowth so we are working on addressing that!

I am so glad to hear that! SIBO can sometimes be really stubborn. MALS can also cause some intestinal pain just depending on how severe the compression is and if other arteries are impacted as well. So that may still be your answer! I hope you get lots of relief soon! 💜 Alyssa

So u feel shortness of breath or like something is pressing up against ur lung ir chest

Information is everything!

Thank you for watching it!! 💜

YAY! Good luck on your boards. I am a premed student, and it makes me so happy that other up and coming providers are learning more about the condition. Thank you so much for watching and for commenting! 💜 Alyssa

Hi there Alyssa, my name is Robin. I am a 46 year old mom of 2 littles. As I was watching your videos I knew that I needed to talk to you. My story started a few years back, about 5, to be exact. I was diagnosed with fibromyalgia . It's a musculoskeletal condition that causes widespread chronic pain. It also causes nerve pain. I am on several different medications for this condition, some including those for widespread nerve pain. My GP also has me on oxycodone for chronic pain. Around late September I started having more troubling issues. Every time I would eat I would have the worse upper GI pain. Got to the point that the only thing I could consume was cranberry juice. From late November up until about a week ago I lost 50+ pounds. I have had so many test done. CT scans, both upper and lower light work done and lastly a barium swallow test. The barium swallow test did however show that I have "Esophageal mobility disorder". My husband and I saw a episode of Grey's anatomy online and it happened to be the one of the young lady that had MALS. My husband wanted me to ask my GP about it at my last appointment but I felt so scared to bring up some other illness once again. The fibromyalgia was so hard to finally diagnose and , like I tell my husband and my family I feel like noone is going to believe me anymore. I'm sick and tired of being sick and tired. I also have a extremely screwed up thyroid system. I'm at the moment being tested for ashimottos. It's just one thing after another. I often feel like my own family is finding it hard to believe anything I say anymore. The pain is just below my breath bone and above my belly button. With my throat when I eat it often feels as if the food or even liquid is stuck in my throat like a huge lump. Even at night laying on my back I struggle to breathe. Am I going crazy? Do you think that I display any MALS symptoms? I mentioned it to my GP this week and he has NEVER heard of MALS. Because of my esophagus he's going to going to contact a GI doctor this coming week and ask him if he's heard of MALS. I'm afraid that if he hasn't this is about as far as I'm gonna get with any of this. You see, I live in Newfoundland, Canada and I have yet to hear of any doctors who know much of anything about the condition in this province. I have also heard that there aren't many in Toronto that work with MALS patients. I'm am so lost and so tired. Any help , weather it be contacts , specialists or even some medical information I could bring to my GP and other specialists that I may need to see. Anything can help. Thank you so much for listening to me. Thank you. Robin Drew of Newfoundland, Canada. 😊

I am so glad you have found your answer! The road to diagnosis can certainly be a long one. Surgery can be really daunting, but life 2.0 after surgery is amazing. It takes a while to recover depending on your specific surgery, but in my opinion, it is worth every second of it! I hope you get relief soon, and let me know if you have any more questions!! Hugs 💜 Alyssa

What were your symptoms??

I am so glad it was helpful! - 💜 Alyssa

You are so welcome! I hope it helped explain the details of what they are looking for. I am also glad to hear it is being considered as a potential diagnosis. I wish you the best of luck in finding your answer and getting relief from your symptoms. Thanks for watching and for commenting! - 💜 Alyssa Layne

@@AlyssaLayne I got an official diagnosis of MALS, so now I bet the block will be something to consider next. phew.

Yay! I am so glad to hear you are getting answers! I am sure the block will be next on the list, enjoy it!. I wanted breakfast food after mine, and pancakes have never been so delicious! - 💜 Alyssa

Awesome, thank you! Hope you learned something while you were here anyway! - Alyssa

@@AlyssaLayne wanna come and talk about the virus? inviting you to talk , we can do a skype or stuff make a video

Hi Forever God Sent! I am hoping to get back on the KZfaq bus very soon (I've had a rough patch lately) and my first planned video back with be about MALS. I am so sorry to hear that you are in pain, and hopefully you can get some relief soon! 💜 Alyssa

Alyssa Layne where did they do your surgery? I need medical attention soon.

I had my 1st surgery at Children's National (I was still a pediatric case at the time) and I had my 2nd surgery at St. Johns hospital in CA, but there are others around the country who do the surgery. I know some of the Facebook groups (I'm in one called MALS PALS) keep lists of all the surgeons who are currently doing the release procedure. I hope this helps and I hope you have a speedy path to treatment and a speedy recovery! 💜 Alyssa

Make another doctor appointment and try and get the imaging there redone as a second opinion. You might have to do go a different doctor altogether.

Hi Twyla, I hope you have been able to find a surgeon and are on the path to feeling better now! - 💜 Alyssa

Hello, did you find it? What's the situation now?

I am doing okay, life has been pretty crazy this year and I don't think it's going to let up anytime soon, but my health has been pretty stable the last several months. Hopefully, when things settle down, I will be able to make a proper update video. Thank you so much for asking! To answer your other question, it could be a problem and weaken the diagnostic power of the CT. I would wait and see what the radiologist report says, and if it's negative for MALS, you might talk to your provider about the breathing and see if they think it warrants a new test. I am sorry you are having to deal with people not being familiar with the conditions or the protocols for the diagnostic testing. I hope you will have answers and relief soon! 💜- Alyssa

I am glad that you were taken seriously and that your medical team is working on a fast timeline! I think the idea that only thin people have MALS comes from the rapid weight loss that it can cause, but those who have been living with it for a long while have to learn to compensate and continue to eat. Even after some of my dramatic weight loss with MALS, I did not classify as "underweight" since I started out with plenty to lose, and I eventually learned how to pick eating even though I knew how much pain it would cause me because starving was no longer a viable option. I hope you find full relief soon from all your symptoms! Thanks for stopping by and sharing! - 💜 Alyssa

@@AlyssaLayne One thing I don’t understand is how doctors do not prescribe pain killers anymore. With their education, they know when someone is in actual pain. The CT Scan and angiogram prove there’s a bad issue. Tentatively, I’m getting surgery about 3 weeks from now. Thank God. I’m so desperate I’m putting arthritis cream on in addition to Tylenol and a hot water bottle. This is terrible. Thank you for listening and sharing so much. I always come back to you!

@tbunnyshy, I am sure many doctors are concerned about the ongoing opioid crisis, and I'm not sure there is a good understanding of just how debilitating MALS pain can be since there is such a range of experiences with MALS. Regardless, I was thankful when I found a doctor who was willing to help me treat my pain while I was waiting for my surgery date. I am so glad to hear that you are getting a surgery date; I can't wait to hear how life 2.0 is for you! Be sure to keep us up to date with how you are doing! - 💜 Alyssa

Hi Austin, I am not a doctor, but MALS could certainly be a possible diagnosis that you might want to bring up with your doctor and look into. I wish you the best and hope you are feeling better now! - 💜 Alyssa

I am so sorry to hear that your daughter has been suffering with such pain. To answer your question, I've had quite an interesting history with hiccups (including having them frequently my whole life and for hours at a time when I was still in the womb), but when my MALS was bad my hiccups would be especially painful and I would do an number of tricks (like holding by breath) to get them to stop. I am also praying that you can get answers and relief for your daughter. Keep up the good fight; I know she greatly appreciates it. 💜 - Alyssa

Have you had further follow ups yet? I totally get the fear, and it is 100% reasonable. Those are valid concerns, but from what I've seen in the community, MALS doesn't cause further issues (though sometimes the surgeries fail and more are needed). It just often presents with a bunch of other illnesses. I was also diagnosed with celiac disease in between 2 of my MALS surgeries. The good news is that we live in a time where doctors know what MALS is and are trying to treat it. Hopefully you will have answers soon and will be on your way to feeling better. Thanks for watching and for sharing!! 💜 - Alyssa

@@AlyssaLayne I only found out at the ER but I’ll soon be doing further testing soon 😊 I really do hope that surgery will really treat it so I can continue to enjoy my life without the pain. I know I still have issues with celiac since they told me it’ll take a year or 2 to fully heal but just can’t wait to get to that point

You for sure will get to that point! And it is amazing that they caught it on a scan in the ER. I have gotten relief from surgery, and life 2.0 is great. The celiac can take some managing, but once you get used to it, its not that bad. Stay in touch and let me know if you have any questions or if there is anything I can do to help! 💜 - Alyssa

@@AlyssaLayne thank you so much I appreciate it and yes I will 😊

I cannot get proper or further testing in Canada for my daughter. I'm so lost.

I never had a pain increase with inhaling versus exhaling, but the compression of the nerve and the celiac artery do change and worsen when exhaling. Hence, it is possible that someone might experience more pain with exhaling. I also found that my pain was localized to my abdomen, and I never felt it in my back. Still, there is a wide variety of MALS experiences out there, so it's possible for the pain to be in the upper back, but I haven't yet met anyone with that experience. Thanks for the questions! - 💜 Alyssa

@@AlyssaLayne thank you very much

Hi Serena, I was never able to feel MALS in my diaphragm, and I think I would have as even before my first surgery I was studying oboe (a wind instrument) in college. This is not to say that what you are experiencing couldn't be MALS, but I did not experience anything like that myself. You might pose this question to one of the MALS Facebook groups and see if there is anyone there with a similar experience. I hope you get to breathing easier and feeling better soon! - 💜 Alyssa

@@AlyssaLayne I appreciate that, thanks Alyssa. Wishing you continued healing.

Absolutely! Fatigue can be and is a big part of MALS. It was often hard for me to place because it is also a symptom of several of my other chronic illnesses. But the constant pain alone can cause fatigue, as can the fact that people are often not getting good nutrition when suffering from MALS. I hope this helps. Let me know if you have other questions! 💜

Alyssa Layne thank you so much. My son is getting investigated for this after so much suffering.. he sleeps about 14hrs a day and the pain stops him from attending year 10 at school .

@@talktechmom5494 I am so sorry to hear that, but I am glad to know that his Drs. are investigating MALS. It is so uncommon that it often is not ever considered by many Drs. Has he ever been tested for/diagnosed with POTS? It could be compounding the fatigue; when I was first diagnosed with POTS, I was 14 years old and sleeping 18 hrs a day. It might be something to consider along with MALS. I pray that you get answers and relief soon, and tell him to take heart because life 2.0 (or even 3.0) after surgery is possible and it is wonderful!

Hi yanaa, I am so glad to hear of people who do not present with rapid weight loss being diagnosed and receiving treatment! I have heard that can be a tremendous struggle. Thank you so much for sharing that; I know it will bring hope to others who are in the same situation. I hope you get to feeling better and get to enjoy life 2.0! - 💜 Alyssa

@@AlyssaLayne thank you dear😊

I did not have much in the way of swelling at all, but my abdomen was sensitive to touch directly on the midline underneath my breastbone. I hope that helps! - 💜 Alyssa

Das klingt nach meinen Beschwerden , ich hatte eine 4D Ultraschalluntersuchung bei Professor Scholbach in Leipzig, man findet auf seiner Seite mein Krankheitsbild : Zwerchfellkompression , bei mir ist hauptsächlich die Leber betroffen ganz selten daher schwierig Ärzte zu finden LG Katrin

HI Briee, They can both be tests for MALS, and most doctors prefer to start with the less invasive doppler ultrasound to evaluate your celiac artery for compression. If you are concerned, it never hurts to double-check the plan with your doctor to make sure you are both on the same page. I wish you luck on your journey to feeling better! - 💜 Alyssa

It should absolutely be CT with contrast that’s how I diagnosed with my multiple vascular compressions.. MALS in addition they may suggest a gastric empty study for the evaluation of gastroparesis I just finished my gastroparesis test few days ago. I know this was months ago but I do hope that you found some answers

Hi Briee, I'm so sorry to hear that you haven't found the answers you are looking for yet. My doppler indicated my MALS. It still required further testing, but that was only pursued after the positive indication from the doppler. There is a theory that the MALS symptoms could be only due to an involvement of the celiac ganglion (nerves) and not the artery, and the Doppler only tests for a compression of the artery. However, this is not a widely held belief, and it could be hard to get your doctor on board with this train of thought, but it might be something to look into. There are people with far more experience with neurogenic MALS on the MALS PALS Facebook group, and that might be a place to find more information on looking into this. I hope you find answers soon! - 💜 Alyssa

They do the nerve block and inject an anesthetic agent into the celiac plexus. I can't find what kind they use for sure, but lidocaine sticks out in my brain for some reason. If you get to that point, I am sure the doctor who performs the procedure (in my case it was a pain specialist) can tell you exactly what they will use. -Hugs 💜 Alyssa

@@AlyssaLayne thanks.

@@jonathanlazaris3627 Thank you for watching !! 💜 Alyssa

What are your symptoms, and how elevated were your velocities via US? Was the SMA and Celiac both showing stenosis? I had surgery 9 years ago with 2 cardiovascular surgeons. They utilized a laporscopic procedure. I had an improvement, although I am currently going through another evaluation. My 1st stop was the US. The next step will most likely be done via an angiogram. Best of luck to you.

Thank you so much for the questions! I did not have pain in my back or on the right side in the front. It just so happens that I also had my gallbladder out as well ( kzfaq.info/get/bejne/fampf6dyq8qbeo0.html ) and anecdotally, gallbladder issues seem pretty common in MALS patients. For me anything thicker than water would trigger pain for me, even the nutrient shakes I was using. The theory is that this is something one is born with, but it is not uncommon for it to be asymptomatic until some point in adulthood. There is definitely a need for more research on that front. Thank you so much for watching! 💜 - Alyssa

Hi Lety, I am so sorry to hear you are still having symptoms. I know that there is a range of responses that people have to surgery, and in my experience, it took me a while to be sure the surgery worked and to see a significant improvement in my health (around 6-8 months and then a year before I felt fully recovered). I also know many people (including myself) require more than 1 surgery. Keep your head up and keep bringing up your concerns with your doctor. Things can still get better. I know how frustrating it can be to have long-lasting health issues, but there is still hope that things will improve. I hope you find relief from your symptoms very soon! - 💜 Alyssa

@@AlyssaLayne how are you now? Any updates?

Hi Layla, I am sorry to hear you are having symptoms but struggling to get a diagnosis. I am not sure there is a consensus about how to diagnose the nerve type. My best guess is they would go for a nerve block and see if your symptoms improve with that. If so, you might be a good candidate for surgery to address those nerves. I hope you are doing better now! - 💜Alyssa

Hi Neha! I understand how you feel! It can be hard to know if you are making a mountain out of a molehill or if there is something wrong. For me, my pain was so debilitating that I knew it had to be something, and my pain was clearly not IBS. Many doctors do not even know about MALS, so it could be good to bring it up with them if you think it might be a possibility. It may also be worth it to visit a doctor who knows about MALS already. There is a list of those doctors on the MALS PALS Facebook page. My best advice is know you are not alone and do your best to advocate for yourself because no one knows what is going on in your body better than you. Best of luck! - 💜 Alyssa

Hi Thesupersneha! As I mentioned, weight loss is not a requirement for MALS. I would suggest asking your doctor about MALS specifically and if they would please do the testing to rule it in or out. I find that asking for a test directly can help move the process along, especially if you think you have an atypical presentation. I am wishing you the best of luck on getting answers and feeling better soon! - 💜Alyssa

This is an excellent question! My understanding is that anyone can be walking around with the compression without knowing and that it in and of itself is quite common. Additionally, I don't know any stats, but it seems to me that most people present with pain, but I seem to recall in the MALS PALS Facebook group some people presented with just nausea. I think for a compression to be called MALS, there also has to be some sign of disruption to the system which is usually pain. In short, I think the answer is yes, but I'm not 100% sure. I hope that helps! Also, thanks for the comment 💜 - Alyssa

Thank you for watching! I'm so sorry to hear you are having complications. I had my first surgery with Dr. Kane in 2017 and I had my second surgery in May of this year with Dr. Bilchik. I am planning on making more of a storytime video in the future that will cover my personal experiences in detail. Let me know when you redo your video, I would love to watch it! Much love 💜

Alyssa Layne sure 💕

I am so sorry to hear that you haven't been able to find answers in the tests. This is not my area of expertise, but I know some in the community believe that MALS is a nerve issue more than it is a compression issue and that no compression of the artery is needed for symptoms to occur. This makes testing for it difficult because two of the standard tests (the CTA and the doppler ultrasound) are testing primarily for the compression of the celiac artery and not the nerves. I don't really know more than that, but the MALS PALS Facebook group might be a good place to find others who've had experience with doctors who are willing to look for and at nerve-only MALS. Best of luck! - 💜 Alyssa

@@AlyssaLayne thank you very much

It took me about 4 months to feel fully recovered from the surgery and the abdominal pain, though I continue to have some other lingering GI issues even now at 7 months post-op.

I felt fully recovered from the MALS pain and back to a good working baseline after about 4 months, though I do have some lingering GI problems now at 7 months post OP, it is also hard to know what those problems are caused by since my health is so complicated! Thank you for watching and asking the question!!

i was hospitalized for a week including 3 days in the critical care unit. it took me easily a year for fully open aorta to celiac artery and gastric artery bypass surgery as i had over 90% of the celiac trunk blocked by the ligament. finding a surgeon who knows how to do this surgery is almost impossible as this is a really rarely performed surgery. i had surgery done by the doctor who had performed the most surgeries in north america and was his 33rd case in an over 50 year career. i was told beforehand that the surgery killed a third of the people who made it to the operating room, but that without surgery, MALS was a terminal illness. unfortunately i had sufferred what was described as gruesome, bloody, and catastrophic damage during what the doctor described as his very worst case. the bottom line is that i have survived at least 13 years later and am grateful.

Hi ooo mmm, thank you so much for sharing your incredible story! I am happy you are still going strong despite having such a severe case. I know there are others in this community who are glad to hear of someone who is seeing long-term relief and for sharing that recovery experiences can vary greatly and depend on many different factors. Thank you again! - 💜 Alyssa

@@AlyssaLayne did the pain hurt?

When it was bad and I pushed just under my sternum, I could feel the huge palpitations in my fingertips and hear them with a stethoscope. I have a bump from my surgical scar there now. 💜 Does that answer your question?

@@AlyssaLayne yes I suppose so, however for me, I've always been able to actually feel a bump in my abdomen. I've gone through a lot in terms of checking for GI issues and everything has been clean. The only diagnosis rn is severe IBS-C, but I've always had a feeling it was something more. I'm a young adult male as well so idk what to think anymore but I'm gonna ask to get this checked. This has affected my life for a long time.

This is certainly something to look into. It isn't often on the initial differential for GI pain. And just because it wasn't a part of my experience does not mean it couldn't be a part of yours! I hope you get both answers and relief soon!!

@@AlyssaLayne if I may ask, how were your bowel movements when you had mals?

I don't mind at all! They were infrequent and slow, but I was not eating every day, and slow motility is common in EDS patients. I would have a BM every 3-4 days.

I have more pain in empty stomach. After eating food it reduce but remain. My CT angiography report it's cnfm that i have Mals

Have u did your surgery

I'm not 100% sure what you mean by a hard heat beat. I could often feel my heat beat in my abdomen (palpitations). I would also be able to tell that my heart was working hard, but this is also a symptom of some of my other conditions (like POTS), so it is difficult for me to tell if it was from MALS or something else. I hope this answers your question. Thanks for watching and for commenting! 💜 - Alyssa

I’m thinking it could be palpitations and some severe case of compression causing pots. Thank you tho. I have been having a lot of issues since my hernia is pressing on my ligaments. A lot of trouble with passing out. Palpitations. Weakness and I can feel the poor blood flow in my chest and racing of the heart like it’s over working. Very scary.

But yes. Feeling my heart beat in my chest.

I am so sorry you are experiencing that. I hope that you receive answers and relief soon! 💜 - Alyssa

yes! I just got diagnosed with MALS and one of my symptoms is my fast heartbeat. Hope you have a great day !

I wasn't really. When I met my surgeon, he was very reassuring, and I had a lot of confidence in him and his ability to perform the surgery. I also knew that there wasn't much of an option to having surgery - there was no way I could go on living my life in the kind of pain that I was in. It also helped that I had my first surgery when I was a kid, and it went well. While there were some nerves day of, I knew that having surgery was going to improve my quality of life, and I was excited to finally feel better! Hugs 💜 Alyssa