@@MrMarley707 milkshakes w/ovaltine added, honey/sugar/agave nectar added to everything you can, ice cream, soda, peanut butter. for real. make sure she brushes her teeth after eating the sugary stuff, good nutrition has to go to the wayside. she has to eat when she’s hungry, even if it’s a few bites. mals surgery is too risky for what it’s worth, the success rate is not great.
@@hereternalsummer8224 i also have exercise intolerance in that it makes me nauseous and have awful abdominal pain for days if i over exert myself in any way.
I’m 5”6 and about 115 lbs. and I have never weighed much more than I do now, but I wonder if it would be possible to reproduce what worked for you. If you feel comfortable sharing, what was your height:weight ratio that made symptoms reduce? I’ve only been told that added muscle mass would help my POTS, but nothing for MALS yet
I just had positive CTA for MALS and Nutcracker syndrome. Besides those two, I was diagnosed with thoracic outlet syndrome, it is also another compression. I haven’t figure out if any of my symptoms are due to the MALS. I just always have a hard time breathing deep without feeling painful pressure around my ribs.. and it became a normal thing to me that I don’t even bring it up to the doctors…same as me having really awful cramps during even after period.
@thrivexstrive painful periods can be from pelvic compression or left renal veins compression which can develop from the other compressions you mentioned. The dr I spoke with said they often build on too of each other so rather than seeing them all as separate compressions, think of them as the next step in severity when you develop the next one. Like a chain.
Bring it up, you likely have vagus nerve damage but docs don't know what that is... but they should note it. And look thru your notes on any exit exam papers they give you, they get all kinds of things wrong like allergies, some syndromes renamed cuz they are ignorant in some rural areas, make any corrections
I am in Canada 🇨🇦and had to laugh when you said no one in canada will look at you. I have spoken to a dr in the states and he called me and we talked for a few hours and I sent my scans to him and he basically diagnosed me with Mals. BUT... it would cost about $50,000 to go see this Dr.
yes, that's been my experience too and Drs here are very suspicious of Drs in other countries who will accept payment and I get that because they don't want us to get scammed but the problem is that public health care has it's limits.
Im not thing and 50 and just finding out I might have this. This is what they said Bones/joints: There is suspected greater than 75% stenosis of the celiac axis origin as it courses under the median arcuate ligament insertion,
Wow. You know SO much lol! I had MALS from January 2018 and had my MALS surgery in July of 2019. Took so long to get diagnosed (May 2019!). But your video made me realize it may be my scoliosis that caused MALS for me. I don't have any other conditions like EDS. If I had EDS I feel like that may have caused MALS for me but I just don't have it. I only ever had MALS by itself. I still watch other people's videos of their experience with MALS because it truly is such a horrible thing to go through and I just want to try to help them out! I loved your video though. You seem so intelligent. Good luck to you! I believe you can get through anything :)
@@hereternalsummer8224 please explain to me why the doctors will confuse you And they diagnosed with mals They said surgery is the only option But stay away from surgery Why did they said That They don't even believe it exists
@@Yyfre The Dr's in Canada did not know what was wrong and at a certain point refused to look further and said it was in my head so I spoke with Dr's in Germany who said they think MALS and a number of other compressions is what I have. They explained it all to me very well and knew my symptoms well but I don't have a diagnosis. The Dr's here do not believe the Dr's in Germany. They think the German Dr's are trying to scam me out of money.
We're in Canada. My daughter 20 is trying to get tested for MALS, and it's absolutely ridiculous. It's like you on a merry-go-round that never stops. You can't get testing or surgery without a vascular surgeon, but the vascular surgeon won't see you without a diagnosis.
@@grace683 That's, I the time since we posted, she did get to see a compression knowledgeable doctor. He was able to confirm she has NCS but he saw no MALS. She is kne of the fortunate few that has had improvement with weight gain. She will likely avoid any surgery if she continues having improvement with her symptoms.
Suffering in my 60s. It is rarer to be older with it but it happens. My symptoms come and go but seem to get worse. It’s so hard to find the right surgeon though.
Who is the physician in Germany with whom you spoke? Am in Canada, in BC - we will never get help here. Will speak to anyone with whom you’ve had any success. Have had symptoms for decades and am an EDS-er. At least one of kids likely have some version of this . Cheers!
Hi love. These are the websites and names of the people I spoke with. Dr scholbach does the testing in Germany and sandmann does the surgery. Dr Morata does different testing and the same surgery in Spain. Dr Thomas scholbach Doppler ultrasound technician -Germany scholbach.de/#gsc.tab=0 Dr Wilhelm Sandmann Vascular Surgeon - Germany Dr Alejandro Rodriguez Morata Vascular Surgeon - Spain www.rodriguezmorata.es
I am getting open surgery in a few weeks. The pain is so bad at times. Doctors no longer prescribe pain killers, even when there is clear cut evidence through ct scans and angiograms of a major issue. I’m so desperate I’m even trying arthritis cream on it, as well as a burning hot water bottle and lots of Tylenol. It’s outrageous how people with a clean lifetime record are ignored.
It is outrageous. No one should have to keep suffering like this! I'm excited for you about the surgery. Fingers crossed you are safe, well and that it works! Let us know how it goes. And also, I use this cream I got off amazon called motion medicine. It is a white bottle with a snow leopard on it. It was some random thing I tried as a sample from a physio office but it works really well (like tiger balm) which I'm sure you could use just as well. It's stronger than any OTC I;ve found. I use it on my lower abdomen during my period as well (I have endo)
The open MALS surgery went well. The pain was gone for a couple of years. Unfortunately my celiac artery is a zigzag and have developed an aneurysm right below it. I have stomach pain and am waiting for ctscan results.
I also get sharp colicky pain in my abdomen, it comes on randomly, there doesn't seem to be a trigger. I'm always full as well/nauseated and my stomach looks dilated on scans, due to the SMAS.
@@hereternalsummer8224 I have to be careful with exercise too, especially upper body stuff. Really messes with my chest/nausea/fullness issues, feel like something is coming out of place like the muscles/organs are all twisted and stuff. Weird
I honestly can’t tell if it’s my MALS or a stomach virus. Yes I was diagnosed with MALS but I’m 18 and not too sure if I’m having an episode or stomach virus. I ate this morning and my stomach hurt and then it stopped and started again when I ate and I’ve had chronic diarrhea all day and chills.I’m also feeling light headed and dehydrated.
@@hereternalsummer8224 yes I was diagnosed almost a year ago by a cardiologist and then again by a radiologist at children’s hospital after many ultrasounds and a CT scan. However I was dealing with a stomach bug last week which I had confused with my MALS. I feel better now but yes I am diagnosed with MALS and have been for about a year :)
I flew to Germany and got diagnosed with SMAS, NCs and MTS, but doctors in the UK don't believe my symptoms are being caused by these compressions, the German doctor also said my pancreas was congested, probably from the SMAS. I never got diagnosed with MALS though, but i know SMAS and MALS symptoms can overlap. Apparently because my body has developed numerous collateral vessells, surgery would be too risky for me and likely not help at all.
@@hereternalsummer8224 it was Prof Scholbach who told me about the congested pancreas, and in his report he wrote all the congestion is due to collateral vessels. However 2 doctors here have said if collateral vessels have formed, having surgery is most likely too risky as the body will naturally try to create those collateral vessells again and so the surgery would be pretty pointless, as all the surgeries do is bypass the compression.
@@vincecrow4512 absolutely northing. The vascular team will never operate on someone with collateral vessels. Anyone that does operate like this will create further risks.
My doctor ordered me a ultrasound to diagnose MALS but I thought it was diagnosed through ct scan :/ she didn’t know much about MALS she had to do research so I hope she’s not wrong
How are you doing now? Do you have your official diagnosis for MALS? Hope they will give you the help you need! Your story of the symptoms you experience is exactly like mine :o I'm finally getting a CT with contrast in a couple of weeks.
@@hereternalsummer8224 I find it really brave of you to take a 'medical break', and give yourself what you need for your mental health! I have been very depressed too, it was so hard to deal with, but it gets better, to go through it is the hardest thing I have ever done, but it pays off. Now I know what to do to keep myself out of the dark cloud. I had my CTA done last week, and Wednesday I can read the results. Never been so nervous for test results as for this one! I'll keep you posted.
@@hereternalsummer8224 The test came back negative :o That's very surprising to say at the least.. Now I have no idea why I have so much pain with eating and all the other typical mals stuff :(
Im having most of these symptoms the most symp are feeling pressure and uncomfortable in my middle upper abdomen area ,naussia , i cant vomit , loss of appetite, wieght loss +30kg ,i feel all my organs are not working 100% , i've been living with this condition more than 6 years now .i did all the tests that you mention and more and they found nothing i dont know what to do actualy Hint : my symptoms are increasing in standing position and i cant take breath from my stomech when im standing i feel so pain
I get a lot of difficulty when standing and walking and my pain increases too. A doppler ultrasound or a CT with dye contrast and inhalation/exhalation would be good to get.
All of your MALS symptoms is exactly what I’ve been happening
I cured mine for 13 years by staying above a certain weight threshold. Once I go under that threshold, all hell breaks loose.
@circusofsix that’s really interesting because I feel a lot better at a higher weight but only if I don’t exercise.
How did you gain the weight with the pains? Protein drinks? My poor 12 year old is having these problems . It’s terrible.
@@MrMarley707 milkshakes w/ovaltine added, honey/sugar/agave nectar added to everything you can, ice cream, soda, peanut butter. for real. make sure she brushes her teeth after eating the sugary stuff, good nutrition has to go to the wayside. she has to eat when she’s hungry, even if it’s a few bites. mals surgery is too risky for what it’s worth, the success rate is not great.
@@hereternalsummer8224 i also have exercise intolerance in that it makes me nauseous and have awful abdominal pain for days if i over exert myself in any way.
I’m 5”6 and about 115 lbs. and I have never weighed much more than I do now, but I wonder if it would be possible to reproduce what worked for you. If you feel comfortable sharing, what was your height:weight ratio that made symptoms reduce? I’ve only been told that added muscle mass would help my POTS, but nothing for MALS yet
I just had positive CTA for MALS and Nutcracker syndrome. Besides those two, I was diagnosed with thoracic outlet syndrome, it is also another compression. I haven’t figure out if any of my symptoms are due to the MALS. I just always have a hard time breathing deep without feeling painful pressure around my ribs.. and it became a normal thing to me that I don’t even bring it up to the doctors…same as me having really awful cramps during even after period.
@thrivexstrive painful periods can be from pelvic compression or left renal veins compression which can develop from the other compressions you mentioned. The dr I spoke with said they often build on too of each other so rather than seeing them all as separate compressions, think of them as the next step in severity when you develop the next one. Like a chain.
Bring it up, you likely have vagus nerve damage but docs don't know what that is... but they should note it. And look thru your notes on any exit exam papers they give you, they get all kinds of things wrong like allergies, some syndromes renamed cuz they are ignorant in some rural areas, make any corrections
I am in Canada 🇨🇦and had to laugh when you said no one in canada will look at you. I have spoken to a dr in the states and he called me and we talked for a few hours and I sent my scans to him and he basically diagnosed me with Mals. BUT... it would cost about $50,000 to go see this Dr.
yes, that's been my experience too and Drs here are very suspicious of Drs in other countries who will accept payment and I get that because they don't want us to get scammed but the problem is that public health care has it's limits.
Im not thing and 50 and just finding out I might have this. This is what they said Bones/joints: There is suspected greater than 75% stenosis of the
celiac axis origin as it courses under the median arcuate ligament
insertion,
Wow. You know SO much lol! I had MALS from January 2018 and had my MALS surgery in July of 2019. Took so long to get diagnosed (May 2019!). But your video made me realize it may be my scoliosis that caused MALS for me. I don't have any other conditions like EDS. If I had EDS I feel like that may have caused MALS for me but I just don't have it. I only ever had MALS by itself. I still watch other people's videos of their experience with MALS because it truly is such a horrible thing to go through and I just want to try to help them out! I loved your video though. You seem so intelligent. Good luck to you! I believe you can get through anything :)
@cheesebubbles thank you. Very happy to hear you got surgery. Has it helped? Who did you see?
@@hereternalsummer8224 please explain to me why the doctors will confuse you
And they diagnosed with mals
They said surgery is the only option
But stay away from surgery
Why did they said
That
They don't even believe it exists
@@Yyfre The Dr's in Canada did not know what was wrong and at a certain point refused to look further and said it was in my head so I spoke with Dr's in Germany who said they think MALS and a number of other compressions is what I have. They explained it all to me very well and knew my symptoms well but I don't have a diagnosis. The Dr's here do not believe the Dr's in Germany. They think the German Dr's are trying to scam me out of money.
Who was the Dr. In Germany?
We're in Canada. My daughter 20 is trying to get tested for MALS, and it's absolutely ridiculous. It's like you on a merry-go-round that never stops. You can't get testing or surgery without a vascular surgeon, but the vascular surgeon won't see you without a diagnosis.
Yes! It’s definitely a catch 22
Hope your daughter gets treated soon .
@@grace683 That's, I the time since we posted, she did get to see a compression knowledgeable doctor. He was able to confirm she has NCS but he saw no MALS. She is kne of the fortunate few that has had improvement with weight gain. She will likely avoid any surgery if she continues having improvement with her symptoms.
Suffering in my 60s. It is rarer to be older with it but it happens. My symptoms come and go but seem to get worse. It’s so hard to find the right surgeon though.
@gaylefailing yes I know. That’s the hardest part!
65 year old male. Just got the diagnosis after eight years of searching for a answer
So happy you found answers. I hope you can get the right treatment.
Been through all of this I think I may have this or another compressions. I have gastroparesis and I just got so bad. Lost so much weight. Now on tpn
I hope you can get the right treatment!
My mother is 66 and she have the pain systems my mom from the Caribbean
I had laparoscopic surgery for MALS in 2012 and I still have issues. Currently experiencing pain and it is awful. MALS is a horrible disease. 🥺
I'm sorry to hear! I hope you can find a way to get relief.
Thank you!
Hello Yvonne
I had surgery and feel worst still.xan I contact you?
Who is the physician in Germany with whom you spoke? Am in Canada, in BC - we will never get help here. Will speak to anyone with whom you’ve had any success. Have had symptoms for decades and am an EDS-er. At least one of kids likely have some version of this . Cheers!
Hi love. These are the websites and names of the people I spoke with. Dr scholbach does the testing in Germany and sandmann does the surgery. Dr Morata does different testing and the same surgery in Spain. Dr Thomas scholbach
Doppler ultrasound technician -Germany
scholbach.de/#gsc.tab=0
Dr Wilhelm Sandmann
Vascular Surgeon - Germany
Dr Alejandro Rodriguez Morata
Vascular Surgeon - Spain
www.rodriguezmorata.es
I don’t have dr sandman’s number but you can get that from dr scholbach
I have hEDS causing these conditions I have MALS and SMAS but thankfully not NCS
I am getting open surgery in a few weeks. The pain is so bad at times. Doctors no longer prescribe pain killers, even when there is clear cut evidence through ct scans and angiograms of a major issue. I’m so desperate I’m even trying arthritis cream on it, as well as a burning hot water bottle and lots of Tylenol. It’s outrageous how people with a clean lifetime record are ignored.
It is outrageous. No one should have to keep suffering like this! I'm excited for you about the surgery. Fingers crossed you are safe, well and that it works! Let us know how it goes. And also, I use this cream I got off amazon called motion medicine. It is a white bottle with a snow leopard on it. It was some random thing I tried as a sample from a physio office but it works really well (like tiger balm) which I'm sure you could use just as well. It's stronger than any OTC I;ve found. I use it on my lower abdomen during my period as well (I have endo)
How did your surgery go .
The open MALS surgery went well. The pain was gone for a couple of years. Unfortunately my celiac artery is a zigzag and have developed an aneurysm right below it. I have stomach pain and am waiting for ctscan results.
I also get sharp colicky pain in my abdomen, it comes on randomly, there doesn't seem to be a trigger. I'm always full as well/nauseated and my stomach looks dilated on scans, due to the SMAS.
I've realized I feel soooooo much better if I don;t exercise which is literally a wheelchair sentence with EDS :(
@@hereternalsummer8224 I have to be careful with exercise too, especially upper body stuff. Really messes with my chest/nausea/fullness issues, feel like something is coming out of place like the muscles/organs are all twisted and stuff. Weird
I honestly can’t tell if it’s my MALS or a stomach virus. Yes I was diagnosed with MALS but I’m 18 and not too sure if I’m having an episode or stomach virus. I ate this morning and my stomach hurt and then it stopped and started again when I ate and I’ve had chronic diarrhea all day and chills.I’m also feeling light headed and dehydrated.
@christina Guerrero, we’re you diagnosed with Mals? Who diagnosed you? I hope you feel better soon
@@hereternalsummer8224 yes I was diagnosed almost a year ago by a cardiologist and then again by a radiologist at children’s hospital after many ultrasounds and a CT scan. However I was dealing with a stomach bug last week which I had confused with my MALS. I feel better now but yes I am diagnosed with MALS and have been for about a year :)
I flew to Germany and got diagnosed with SMAS, NCs and MTS, but doctors in the UK don't believe my symptoms are being caused by these compressions, the German doctor also said my pancreas was congested, probably from the SMAS. I never got diagnosed with MALS though, but i know SMAS and MALS symptoms can overlap. Apparently because my body has developed numerous collateral vessells, surgery would be too risky for me and likely not help at all.
Oh wow really!? This is what the German Dr said? Was it Dr Sandmann?
@@hereternalsummer8224 it was Prof Scholbach who told me about the congested pancreas, and in his report he wrote all the congestion is due to collateral vessels. However 2 doctors here have said if collateral vessels have formed, having surgery is most likely too risky as the body will naturally try to create those collateral vessells again and so the surgery would be pretty pointless, as all the surgeries do is bypass the compression.
@@AdaptandAppreciate What did Dr Sandmann say about having surgery? What are the drs there recommending you do then?
@@AdaptandAppreciate what did the doctor suggest you do about it?
@@vincecrow4512 absolutely northing. The vascular team will never operate on someone with collateral vessels. Anyone that does operate like this will create further risks.
My doctor ordered me a ultrasound to diagnose MALS but I thought it was diagnosed through ct scan :/ she didn’t know much about MALS she had to do research so I hope she’s not wrong
@Briee Star it can be diagnosed by Doppler ultrasound or CT with contrast and inhalation/exhalation
How are you doing now? Do you have your official diagnosis for MALS? Hope they will give you the help you need! Your story of the symptoms you experience is exactly like mine :o I'm finally getting a CT with contrast in a couple of weeks.
@Rosaliedejong I don't have my official diagnosis yet. I just made an update video for everyone! Did you get a diagnosis yet?
@@hereternalsummer8224 I find it really brave of you to take a 'medical break', and give yourself what you need for your mental health! I have been very depressed too, it was so hard to deal with, but it gets better, to go through it is the hardest thing I have ever done, but it pays off. Now I know what to do to keep myself out of the dark cloud. I had my CTA done last week, and Wednesday I can read the results. Never been so nervous for test results as for this one! I'll keep you posted.
@@rosaliedejong9897 Thank you
@@hereternalsummer8224 The test came back negative :o That's very surprising to say at the least.. Now I have no idea why I have so much pain with eating and all the other typical mals stuff :(
@@rosaliedejong9897 I'm sorry hun. What test did you do? Have you ever done an EUS? Perhaps it's chronic pancreatitis?
Im having most of these symptoms the most symp are feeling pressure and uncomfortable in my middle upper abdomen area ,naussia , i cant vomit , loss of appetite, wieght loss +30kg ,i feel all my organs are not working 100% , i've been living with this condition more than 6 years now .i did all the tests that you mention and more and they found nothing i dont know what to do actualy
Hint : my symptoms are increasing in standing position and i cant take breath from my stomech when im standing i feel so pain
I get a lot of difficulty when standing and walking and my pain increases too. A doppler ultrasound or a CT with dye contrast and inhalation/exhalation would be good to get.