I was diagnosed with mals 2 months ago and i wish i had come accross this video at the beginning. After 4 different hospitals and 3 long ER visits, doctors still disagree if i have mals or something else. I think the important thing is to eliminate all other possible diagnoses before proceeding to mals surgery. I have had two ctas, two ultrasounds, one EGD and lots of blood work. I have an upcoming celiac block. I have lost over 25 pounds and now surviving on boost high calorie shakes, 4x a day. This is a very difficult disease to diagnose. I have found it very hard to find a surgeon with experience doing the mals procedure, even then they all seem reluctant to do the surgery unless every thing else has been ruled out. Getting an appointment with a GI doc has been the hardest part as they are all booked months in the future. What i thought would take a month or two to resolve is going to take 6 months to a year to figure out and hopefully get back to normal, that is the big change for me is my state of mind about what to expect. Larry
I think I might have this. I have had several procedures and hospital visits because of my symptoms since the beginning of the year but still no diagnosis, just guess treatments (some did help to relieve the pain). I finally have an appointment w my primary doctor next week(which I booked months ago because he was booked through out)
I had MALS resection surgery 5 years ago. The MALigament and both bundles of nerve bundles removed. I am now suffering again with the exact same symptoms and the vascular surgeon says the celiac artery is too injured to stent and he said it will rupture and I would bleed to death if I had surgery. ( also an anurism of on the celiac artery is a 1.1 ). Is my only option to go on living like this? Is there another option?
I am the rare male that was born with this and required open double bypass emergency surgery. MALS is profoundly painful and finding a surgeon who knows how to do repairs is really difficult considering the rarity of MALS, not to mention it is fatal without the surgery, which still has a 1 in 3 death rate.
Hi I am so sorry for what you have been through but sounds like you were well taken care of, which I am glad to hear. I do want to clarify though that MALS is not an emergency nor is it fatal without surgery. I don’t want patients to get the wrong idea. There also is not a 1 in 3 death rate, whether you are referring to patients who do or do not undergo surgery. MALS surgery is performed to improve one’s quality of life because of debilitating pain, not because of the risk of death without surgery. I have done over 100 MALS surgeries with no deaths so if you are in the right hands, surgery is safe. Thank you for commenting. 😊
How do we get doctors to order the ctA with breathing protocol? My daughter had surgery. It’s back. Ultrasound shows stenosis. Every doctor says you don’t need the breathing protocol for a ctscan. It doesn’t make sense to me to do it for an ultrasound and not the other
So if the only issues are nausea gastro issues after eating then why surgery? Recently diagnosed on CT scan for me but confused as to what im dealing with. Is this fatal or just issues after eating?
Dr my vascular dr ordered yesterday vascular ultrasound of abdomen aorta is it test which can confirm smas and mals .please reply I donor have enough knowledge really need help from you because there are no enough dr here in Finland experience in mals and smas
@@motorheadtraveler My wife had surgery for this 4 months ago. she had severe pain after eating. Lots of vomitting (she became malnourished and needed to rely on feeding tubes) She lost her hair and nails due to the malnutrition. After eating, it would be painful. Leaning forward would ease the pain slightly. She would have a year period of not being able to digest much, then about 2 years of being “normal” for the cycle to repeat until it grew too much. Fatigue, couldnt exercise. Her breaths were about twice the size of mine (this is caused by a larger diaphram that will “pull” the median arcuate ligament down which crushes the artery. Hope you find answers soon!!
My son had surgery to release the ligament, but he still has abdominal pain with any oral intake. Now malnourished, wt 100, celiac plexus block was not effective. Very sad condition.
No surgeon in Australia will touch this surgery and needs to be done by an expert and open surgery so can deal with the scar tissue and fibrosis to reduce further issues still. However i am finding it impossible to get help and meanwhile now can hardly eat and the nerve bundle irritation means stuck in flight or fight and compressed tightness now is 24/7 from chest to radiate down abdomen and into back. Feels like im stuck internally right aide body and nothing helps ease the pain. Spreading and more deep and visceral issues longer its left. My autonomic dysfunction is worse and blpod pooling in legs wtc etc. Vicious cycle
Many possibilities, unfortunately. Nausea does not commonly improve as often as pain does with MALS surgery. Examples for reasons for nausea incidence: Gastroparesis, GERD, SMA syndrome, SIBO, etc..
@@dannyshouhedmd401 Thanky You for answers! Basen on Your experience where would You start looking for the cause? Gastro- and colonoscopy without changes. Before surgery there were no abdominal pains, only big nausea, tachykardia and cold tremors. And only nausea left :(
Thank you for a comprehensive graphic explanation of this condition. My daughter who has Ehlers Danlos Syndrome is going to be investigated for MALS. An upper G.I. study has shown that she has superior mesenteric artery syndrome and nutcracker syndrome. She has an N-J tube for nutrition but still has a great deal of pain that pain medication really doesn't treat, and after a month with the tube still can't keep any food or liquid down if consumed by mouth. She also keeps vomiting up her N-J tube. Does MALS typically cause these other syndromes in an EDS patient? Or is possible they all occur concurrently? And is it possible to have surgery for all three at once?
My 32 year old who rolled on the floor as a toddler, vomited bile and was ridiculed by his peer just found out the cause. He has hEDS too. So happy and hope his upcoming surgery will help him.
I was diagnosed with mals 2 months ago and i wish i had come accross this video at the beginning. After 4 different hospitals and 3 long ER visits, doctors still disagree if i have mals or something else. I think the important thing is to eliminate all other possible diagnoses before proceeding to mals surgery. I have had two ctas, two ultrasounds, one EGD and lots of blood work. I have an upcoming celiac block. I have lost over 25 pounds and now surviving on boost high calorie shakes, 4x a day. This is a very difficult disease to diagnose. I have found it very hard to find a surgeon with experience doing the mals procedure, even then they all seem reluctant to do the surgery unless every thing else has been ruled out. Getting an appointment with a GI doc has been the hardest part as they are all booked months in the future. What i thought would take a month or two to resolve is going to take 6 months to a year to figure out and hopefully get back to normal, that is the big change for me is my state of mind about what to expect. Larry
This is a great video. Thanks for sharing.
I think I might have this. I have had several procedures and hospital visits because of my symptoms since the beginning of the year but still no diagnosis, just guess treatments (some did help to relieve the pain). I finally have an appointment w my primary doctor next week(which I booked months ago because he was booked through out)
I had MALS resection surgery 5 years ago. The MALigament and both bundles of nerve bundles removed. I am now suffering again with the exact same symptoms and the vascular surgeon says the celiac artery is too injured to stent and he said it will rupture and I would bleed to death if I had surgery. ( also an anurism of on the celiac artery is a 1.1 ).
Is my only option to go on living like this? Is there another option?
No it’s not.
I am the rare male that was born with this and required open double bypass emergency surgery. MALS is profoundly painful and finding a surgeon who knows how to do repairs is really difficult considering the rarity of MALS, not to mention it is fatal without the surgery, which still has a 1 in 3 death rate.
Hi I am so sorry for what you have been through but sounds like you were well taken care of, which I am glad to hear.
I do want to clarify though that MALS is not an emergency nor is it fatal without surgery. I don’t want patients to get the wrong idea. There also is not a 1 in 3 death rate, whether you are referring to patients who do or do not undergo surgery. MALS surgery is performed to improve one’s quality of life because of debilitating pain, not because of the risk of death without surgery. I have done over 100 MALS surgeries with no deaths so if you are in the right hands, surgery is safe. Thank you for commenting. 😊
I think i might have this im a 23 yr old male and i have like this wierd constant feeling in my sternum area what should i tell my doctor
How do we get doctors to order the ctA with breathing protocol? My daughter had surgery. It’s back. Ultrasound shows stenosis. Every doctor says you don’t need the breathing protocol for a ctscan. It doesn’t make sense to me to do it for an ultrasound and not the other
So if the only issues are nausea gastro issues after eating then why surgery? Recently diagnosed on CT scan for me but confused as to what im dealing with. Is this fatal or just issues after eating?
Dr my vascular dr ordered yesterday vascular ultrasound of abdomen aorta is it test which can confirm smas and mals .please reply I donor have enough knowledge really need help from you because there are no enough dr here in Finland experience in mals and smas
Is belching common with mals?
😂#me burp queen
I am diagnosed with MALS syndrome and SMA syndrome..
what are your symptoms, even my father suffer from abdominal pain, but he doesnot have pain while eating. doctors are suspecting as MAL
@@motorheadtraveler My wife had surgery for this 4 months ago. she had severe pain after eating. Lots of vomitting (she became malnourished and needed to rely on feeding tubes) She lost her hair and nails due to the malnutrition. After eating, it would be painful. Leaning forward would ease the pain slightly. She would have a year period of not being able to digest much, then about 2 years of being “normal” for the cycle to repeat until it grew too much. Fatigue, couldnt exercise.
Her breaths were about twice the size of mine (this is caused by a larger diaphram that will “pull” the median arcuate ligament down which crushes the artery. Hope you find answers soon!!
@@rhyserian5406 thank you for the reply. Appreciate brother.
@@rhyserian5406Is it all right now?
My son had surgery to release the ligament, but he still has abdominal pain with any oral intake. Now malnourished, wt 100, celiac plexus block was not effective. Very sad condition.
No surgeon in Australia will touch this surgery and needs to be done by an expert and open surgery so can deal with the scar tissue and fibrosis to reduce further issues still. However i am finding it impossible to get help and meanwhile now can hardly eat and the nerve bundle irritation means stuck in flight or fight and compressed tightness now is 24/7 from chest to radiate down abdomen and into back. Feels like im stuck internally right aide body and nothing helps ease the pain. Spreading and more deep and visceral issues longer its left. My autonomic dysfunction is worse and blpod pooling in legs wtc etc. Vicious cycle
Sounds like MALS. Happy to help..please call the office.
Constant nausea before and after open MALS surgery (Europe). What is a reason?
Many possibilities, unfortunately. Nausea does not commonly improve as often as pain does with MALS surgery. Examples for reasons for nausea incidence: Gastroparesis, GERD, SMA syndrome, SIBO, etc..
@@dannyshouhedmd401 Thanky You for answers!
Basen on Your experience where would You start looking for the cause? Gastro- and colonoscopy without changes. Before surgery there were no abdominal pains, only big nausea, tachykardia and cold tremors. And only nausea left :(
Thank you for a comprehensive graphic explanation of this condition. My daughter who has Ehlers Danlos Syndrome is going to be investigated for MALS. An upper G.I. study has shown that she has superior mesenteric artery syndrome and nutcracker syndrome. She has an N-J tube for nutrition but still has a great deal of pain that pain medication really doesn't treat, and after a month with the tube still can't keep any food or liquid down if consumed by mouth. She also keeps vomiting up her N-J tube. Does MALS typically cause these other syndromes in an EDS patient? Or is possible they all occur concurrently? And is it possible to have surgery for all three at once?
My 32 year old who rolled on the floor as a toddler, vomited bile and was ridiculed by his peer just found out the cause. He has hEDS too. So happy and hope his upcoming surgery will help him.