I have mals it took 7 years and now insurance wants to say it’s exploratory surgery and not pay 4 days before surgery when it’s not they worded it celiac stetting ext I’m in a fight for me life I’m not sure how they would leave me this way or what care plan would work I’m I. Shock
Yup I lost 50 pounds in 3 months last year because when I eat I get pain. There’s been no diagnosis yet for me and all the doctors just want to give me different prescriptions but they don’t know what they are treating. It’s extremely frustrating on my end. Not sure what to do. Any advice would be greatly appreciated thanks.
Noone will do surgery in Australia and horror outcomes are scary. Mine is getting so bd its constant gripping gnarling pressure pain and nerve irriation in right side chest and now as vetting worse is spreading down abdomen and into back. Im so underweight as food is hard and no appetite as in flight or fight all the time. Its causing severe autonomic dysfunction issues and the lonher the nerve irriation is left with worse issues are getting
Thanks for these vidoes. My 14 year old was just diagnosed with MALS, and we are waiting to see her pediatrician to get a pediatric vascular surgeon referral. My baby is hurting, trouble eating, and has lost a good 20 pounds in last 2 months. ER doctor's got the CT scan results and had no idea what MALS was and had to make calls to find out and how to explain to us what was wrong. Hoping for help soon. These videos help explain to me what's going on. Just wish we could get her help very very soon.
VtOS aTos nutcracker syndrome and malS sufferer here. Looking at surgery for VTOS but mals surgery has horror stories. I am underweight and struggle to gain and ny vascualr compressions have caused worsening autonomic dysfunction hence wasting away further as cant exercise, gain weight or strengthen body and posture. Would a feeding tube to gain weight help cure MaLS and nCs.
@@dannyshouhedmd401 their is no help in Australia for surgery and given financial issues travelling internationaly is not an option. Im worried given the constant spiral and stress and wasting away that ill soon die or take own life as cannot live like this anymore. Their has to be some sort of expertise help in Australia
Can MALS symptoms come and go (zero pain one day, severe pain the next)? Can symptoms get worse during the menstrual cycle? Does pain usually have a sudden onset? What does MALS pain typically feel like (quality of pain)? Thanks for the information!
What about postpradial panic attacks? I have a family member with CT/US confirmation of SEVERE celiac artery compression. They have SOME pain with eating. But typically, they experience a panic attack instead. It is NOT from fear of eating (though that exists) they will eat, and 20 minutes later experience dyspnia and a panic attack. They describe it as someone "reaching into there chest and shaking their spine". Is this a possibility with MALS? Could this be an atypical presentation? Have you seen this symptom with any MALS patient you have treated? They are scheduled for MALS decompression in a month- but we are screptical this is the correct diagnosis due to what ive described above.
I would like to add they have had gastroporesis & SIBO ruled out. Negative EGD. Has lost 50 pounds. Negative for parasites or other GI issues. 1 month Prior to their symptoms had food poisoning followed by COVID. Multiple MDs have shrugged thier shoulders and said its "probably MALS" but are always unsure. I know the likelihood of getting any response from your RUclips comments section is low- but im throwing lines out everywhere i can think to do so because the past 2 months have been a nightmare. Help a brother out?
@dannyshouhedmd401 What about activation of the fight or flight response via the celiac artery compression? My understanding is there is a strong relationship between CN X & the plexis. Im specifically wondering if the compression could irritate the celiac/vagus area enough to actually initiate fight or flight panic episodes. Have you seen that in your MALS patients? Do you think that would that even be possible? The anxiety does not seem to be related to the other MALS symptoms as the panic attacks actually started BEFORE any other symptoms.
I have mals it took 7 years and now insurance wants to say it’s exploratory surgery and not pay 4 days before surgery when it’s not they worded it celiac stetting ext I’m in a fight for me life I’m not sure how they would leave me this way or what care plan would work I’m I. Shock
Yup I lost 50 pounds in 3 months last year because when I eat I get pain. There’s been no diagnosis yet for me and all the doctors just want to give me different prescriptions but they don’t know what they are treating. It’s extremely frustrating on my end. Not sure what to do. Any advice would be greatly appreciated thanks.
Noone will do surgery in Australia and horror outcomes are scary. Mine is getting so bd its constant gripping gnarling pressure pain and nerve irriation in right side chest and now as vetting worse is spreading down abdomen and into back. Im so underweight as food is hard and no appetite as in flight or fight all the time. Its causing severe autonomic dysfunction issues and the lonher the nerve irriation is left with worse issues are getting
Thanks for these vidoes. My 14 year old was just diagnosed with MALS, and we are waiting to see her pediatrician to get a pediatric vascular surgeon referral. My baby is hurting, trouble eating, and has lost a good 20 pounds in last 2 months. ER doctor's got the CT scan results and had no idea what MALS was and had to make calls to find out and how to explain to us what was wrong. Hoping for help soon. These videos help explain to me what's going on. Just wish we could get her help very very soon.
We would be happy to help as well. Please call our office.
I just find out today that I have mals. I hope your son doing well 🙏🙏
My issues is that it's affecting my neck and I can't breath and my stomach feels like it's being crushed
What kind of doctor should I see?
How do we find a doctor that knows about MALS?
Mine was right sides pain
VtOS aTos nutcracker syndrome and malS sufferer here. Looking at surgery for VTOS but mals surgery has horror stories. I am underweight and struggle to gain and ny vascualr compressions have caused worsening autonomic dysfunction hence wasting away further as cant exercise, gain weight or strengthen body and posture. Would a feeding tube to gain weight help cure MaLS and nCs.
I’m sorry for what you are going through. Weight gain does not cure MALS..only surgery. If surgery is done by someone with experience, you will be ok.
@@dannyshouhedmd401 their is no help in Australia for surgery and given financial issues travelling internationaly is not an option. Im worried given the constant spiral and stress and wasting away that ill soon die or take own life as cannot live like this anymore. Their has to be some sort of expertise help in Australia
What doctors specialize in mals i am from Canada
Can MALS symptoms come and go (zero pain one day, severe pain the next)? Can symptoms get worse during the menstrual cycle? Does pain usually have a sudden onset? What does MALS pain typically feel like (quality of pain)? Thanks for the information!
Typically not. This sounds like something gynecological..perhaps endometriosis.
Dr does vascular surgeon can treat mals and smas
What about postpradial panic attacks? I have a family member with CT/US confirmation of SEVERE celiac artery compression. They have SOME pain with eating. But typically, they experience a panic attack instead. It is NOT from fear of eating (though that exists) they will eat, and 20 minutes later experience dyspnia and a panic attack. They describe it as someone "reaching into there chest and shaking their spine". Is this a possibility with MALS? Could this be an atypical presentation? Have you seen this symptom with any MALS patient you have treated? They are scheduled for MALS decompression in a month- but we are screptical this is the correct diagnosis due to what ive described above.
I would like to add they have had gastroporesis & SIBO ruled out. Negative EGD. Has lost 50 pounds. Negative for parasites or other GI issues. 1 month Prior to their symptoms had food poisoning followed by COVID. Multiple MDs have shrugged thier shoulders and said its "probably MALS" but are always unsure. I know the likelihood of getting any response from your RUclips comments section is low- but im throwing lines out everywhere i can think to do so because the past 2 months have been a nightmare. Help a brother out?
Yes dyspnea is a common symptom associated with MALS.
@dannyshouhedmd401 What about activation of the fight or flight response via the celiac artery compression? My understanding is there is a strong relationship between CN X & the plexis. Im specifically wondering if the compression could irritate the celiac/vagus area enough to actually initiate fight or flight panic episodes. Have you seen that in your MALS patients? Do you think that would that even be possible? The anxiety does not seem to be related to the other MALS symptoms as the panic attacks actually started BEFORE any other symptoms.
Did the surgery help?
@@beatz3279 YES! COMPLETELY NORMAL NOW!
Do you cut celiac ganglions completely ?
No but we do take the nerves that appear damaged
I look forward to meeting you in a couple weeks for a MALS consultation after 8 months of extensive GI workup and nausea/pain with eating.