Superior Mesenteric Artery Syndrome- Anyone Heard Of This (a.k.a. The Nutcracker Syndrome)

[RedViolin]

Repeat post deleted

[FMcGee]

Wow, I wonder if I have this? I'm not underweight, but I'm mostly muscle, and I was underweight until I made a pretty determined effort to put some weight back on, about six months ago, as I felt completely miserable all the time. Now I'm eating gluten-free, but I feel this nausea a lot of the time. I used to be hungry all the time, but now I go for four hours or so without getting hungry, and then, WHAM! It's like I'm falling over and have to eat immediately, and I'm extremely nauseated (I hate throwing up and hold my food down successfully, fortunately). Even after I eat I don't always feel better. I have gravitated to the low-fat diet, too, because those foods seem to work better, but if I try to eat a meal-sized quantity of anything, even low-fat foods or veggies, hours of misery follow. Does this sound like SMAS?

[jaygee]

Hello. I have added some information from Wikipedia (I realize it's credibility is questionable). I think there may be some confusion. I also have been diagnosed with Nutcracker Syndrome, but it is of a vascular nature and relates to my chronic venous insufficiency and pelvic congestion syndrome. I hope the following information helps you guys:

Nutcracker syndrome is the renal vein entrapment syndrome, or mesoaortic compression of the left renal vein

[Generic]

okay so for all you experts who have this. I can't really find a list of symptoms. I have had for the last year and a

half the following sypmtoms and procedures.

I have severe pain on the left side just under my rib cage and a little up into my chest area (it almost feels like my

heart). I always have the pain, but sometimes it is tolerable. When I move around remotely like sweeping, moving

something heavy, get dressed, etc. my heart starts pounding. Not racing but pounding like it might beat out of my

chest. Intermitent pain in my left ovary area. They thought I had ovarian cysts. That was ruled out. I keep getting

bladder infections /UTI. Still have blood in my urine. I get light headed, (turn around to fast, stand up). I start to get

severe pain, almost like a severe hunger pangs. I eat a whole bunch, then the pain stops for a little while, but then it

comes back. I don't have any appetite most of the time. Yes I have lost weight and was a lean person to begin with.

Right now I am hovering around 124 lbs, @ 5'8" female. I haven't thrown up in awhile. But I was living off anti-

neausea pills awhile back.

I have had my gallbladder taken out (it was full of stones).

2 ERCPS (bile duct cut) I had a stone stuck in it. spincter of oddi dysfunction.

1 Endoscopic ultrasound.

I had an 8 mm kidney stone. It was blasted twice externally, once interally via my urethrea (sp)? Then they did a

nephrotomy they basically cut a hole in my kidney and took it out that way.

Thanks for reading my long post. Any thoughts would be greatly appreciated. I am getting to the point of the quality of my life sucks and can't imagine living this way for another 50 or 60 years.

[FMcGee]

This sounds like exactly what I have, which the doctors think is probably gastroparesis (I'm getting tested in a couple of weeks), not SMA. Have you seen your doctor? The trick with gastroparesis seems to be eating an extremely low-fiber diet, which sounds like hell to me, but that's life, I guess.

[Generic]

I go to the Dr. at least once a month. They just write another script for percocet. They seem to be at a loss. I will ask about that. See if I can get some sort of testing for it. Thanks for your reply.

[FMcGee]

I go to the Dr. at least once a month. They just write another script for percocet. They seem to be at a loss. I will ask about that. See if I can get some sort of testing for it. Thanks for your reply.

Yeah, percocet won't help. The problem is that nerve damage to the stomach (mine was caused by my endoscopy) means the stomach doesn't empty out, and so food just sits there, making you feel full and sick. It also causes my blood sugar level to bounce all over the place. The test is a stomach-emptying test. You go in on an empty stomach, and they give you eggs or contrast fluid or something to swallow, and watch as it goes through your stomach via a camera you swallow. I'll let you know how it goes!

[LittleMissPatient]

I was diagnosed with superior meseneric artery syndrome about two years ago!!!

I was diagnosed via barium xray. It was a nightmare.

At the time, I was only able to go to the bathroom once a month. I was 5'7 and 83 pounds.

Since then, I still have awful pain, awful peristalsis, and awful food allergies. I have gained a little weight, but I am still severely underweight and still very malnourished due to malabsorption and diet restrictions. I have to eat the SAME exact thing every day. I felt the need to post about this when I read that someone had mentioned fat intolerance. I cannot have ANY fat. I've never met anyone with as severe of a fat intolerance as myself. My entire diet is fat free. I can't even so much as LOOK at oil (lol). I also cannot tolerate animal protein. I literally eat the same 6 or 7 foods every day.

I would LOVE to hear more about others' experiences with diet and treatment.

I really hope that you all get some relief and some answers soon!

[cheryl34]

Hi,

Has anyone ever heard of this? Apparently I have superior mesenteric artery syndrome. Also known as the nutcracker syndrome. I have celiac disease and I am on a completely gluten free diet. I've done some research on the Internet, and it says people get the nutcracker syndrome because of untreated celiac disease. However, I eat like 10 or 11 foods and I phone every company of every product I eat to check if there is gluten in it. I do eat out at restaurants however I talk to a manager usually and explain what I need. Has anyone heard of this? Thanks

Danielle

I have because I was just diagnosed after test after test that I have superior mesentric artery syndrome. It is blocking my duodenum and I go see a surgeon on the 13th. I have lost a lot of weight due to this. So don't feel alone the research I have done on this does say that it is rare.

[cheryl34]

I was diagnosed with superior meseneric artery syndrome about two years ago!!!

I was diagnosed via barium xray. It was a nightmare.

At the time, I was only able to go to the bathroom once a month. I was 5'7 and 83 pounds.

Since then, I still have awful pain, awful peristalsis, and awful food allergies. I have gained a little weight, but I am still severely underweight and still very malnourished due to malabsorption and diet restrictions. I have to eat the SAME exact thing every day. I felt the need to post about this when I read that someone had mentioned fat intolerance. I cannot have ANY fat. I've never met anyone with as severe of a fat intolerance as myself. My entire diet is fat free. I can't even so much as LOOK at oil (lol). I also cannot tolerate animal protein. I literally eat the same 6 or 7 foods every day.

I would LOVE to hear more about others' experiences with diet and treatment.

I really hope that you all get some relief and some answers soon!

Why hasn't your doctor did surgery? my gastrologist said for mine surgery was the only way to go because SMAS is your aorta laying on your duodeum blocking food from passing into the small intestines. I will vomit undigested food because of the blockage I am 5'7 110 lbs use to be 170. Yeah with the fat I am the same way I haven't eatin fried food for a long time. When it first started I thought all the nausea and vomiting was frommy panic attacks until it got to where it hurt to eat. All the research i've did on it since my diagnosis I haven't seen anything about changing diet as treatment. My duodenum is damaged from it maybe that is why they are going to perform surgery. They are going to join my small intestine to my stomach likebypass the damaged part of my duodenum.

[Wendy Cohan, RN]

Hi,

Has anyone ever heard of this? Apparently I have superior mesenteric artery syndrome. Also known as the nutcracker syndrome. I have celiac disease and I am on a completely gluten free diet. I've done some research on the Internet, and it says people get the nutcracker syndrome because of untreated celiac disease. However, I eat like 10 or 11 foods and I phone every company of every product I eat to check if there is gluten in it. I do eat out at restaurants however I talk to a manager usually and explain what I need. Has anyone heard of this? Thanks

Danielle

[Wendy Cohan, RN]

Hi,

Has anyone ever heard of this? Apparently I have superior mesenteric artery syndrome. Also known as the nutcracker syndrome. I have celiac disease and I am on a completely gluten free diet. I've done some research on the Internet, and it says people get the nutcracker syndrome because of untreated celiac disease. However, I eat like 10 or 11 foods and I phone every company of every product I eat to check if there is gluten in it. I do eat out at restaurants however I talk to a manager usually and explain what I need. Has anyone heard of this? Thanks

Danielle

Hi Danielle,

I've heard of it - had a patient with it in the hospital (I'm a nurse). It took my persistence and multiple doctors and multiple imaging tests to find out what was wrong. The doctor demanded a psych. consult, as they often do when they don't know what's really wrong. I am so glad you were able to get a correct diagnosis.

Wendy

[King Tainium]

Hi,

Has anyone ever heard of this? Apparently I have superior mesenteric artery syndrome. Also known as the nutcracker syndrome. I have celiac disease and I am on a completely gluten free diet. I've done some research on the Internet, and it says people get the nutcracker syndrome because of untreated celiac disease. However, I eat like 10 or 11 foods and I phone every company of every product I eat to check if there is gluten in it. I do eat out at restaurants however I talk to a manager usually and explain what I need. Has anyone heard of this? Thanks

Danielle

I was diagnosed with sma syndrome back in March 08' and I don't know how to even start handling it. I think about it all of the time and I'm really scared of what could happen. I feel the pain and discomfort of it almost everyday. Its not as bad as it was last year but its just about the same though. I seen a couple of doctors about it and all they can tell me right now is to try to change my diet and see where that goes. When they diagnosed me my spacing around my artery was only 4mm. I can't even play with my kids sometimes. I just really need some kinda guidence I've been on my own most of my life without parents so this is really tuff on me. I just wanna feel better

[PinRouge]

Hi everyone! Too bad that you're not often here. I would have been very happy to talk for the 1rst time to people who also have SMAS.

I'm a man, have 30 and live in Canada and speak french (sorry for any language errors).

I never had any symptoms before 22 years old, but I have a thin frame. One day, I started having tachycardia (rapid heart beats) and irregular heart beats. Then I loose a lot of weight in some weeks. That was the end of my first live and the beginning of a "new" one.

From then, I started having strange symptoms. After I eat, I used to have a continuous strong heart beats, as if I was doing a difficult physical effort. If I stand up and walk, I feel dazed and my stomach empty itself quickly, even if I just ate 10 min. before. After my stomach is empty, I suddenly feel better. But I often feel a pain, as if something was pulling my intestine. The following years, from 2000 to 2006, I became weaker year after year, and feeling as if my heart was becoming weaker.

The doctors were unable to know what I have. They started in 2004 to say that everything is because of anxiety and to just kick my butt and that I'm imagining things... until 2006 when I got a huge drop. I lost in some weeks 30 pounds, and was so weak that my life almost got in danger. Then I was told that I have a "mesenteric pincer"(translation from french) after a test. They just said that my mesenteric artery obstruct a part of the duodenum. My gastroenterologist said that the only thing that he could do is a surgery, but said that I was too weak for having one.

But now I feel better, and everything is more in control. I must eat small amount of foods and eat often, and foods that are easy to digest. I rest a lot to spare the few energy that I get. I can't work. I got alone after all these years. The biggest danger is depression. I have now heart failure. I guess my heart get hurt when my mesenteric artery is compress because foods is in the duodenum.

I told you my story for anyone who could have some similarities with me.

Does any one of you got heart problem like me?

[Jacqueline Clark]

Hi,

Has anyone ever heard of this? Apparently I have superior mesenteric artery syndrome. Also known as the nutcracker syndrome. I have celiac disease and I am on a completely gluten free diet. I've done some research on the Internet, and it says people get the nutcracker syndrome because of untreated celiac disease. However, I eat like 10 or 11 foods and I phone every company of every product I eat to check if there is gluten in it. I do eat out at restaurants however I talk to a manager usually and explain what I need. Has anyone heard of this? Thanks

Danielle

Hi Dani,

Trusting eating out is not always such a good idea. I hate to say it but few people "get it" when you tell them you can not have gluten. Most people truly try, but don't understand to what extent it really means. When you are eating out it can be as simple as them using the same knife they just cut a sandwich with and use it to cut something on your plate. I have found the safest place to eat is a Thai rest. I pack may lunch/dinner when eating out with friends and family, really no big deal. Hang in there and keep the faith.

Jacqueline

[dlannon]

I have just been told I have SMA Syndrome. I am seeking help from anyone that is out there with this condition. Based upon the post dates in this blog, I am hopeful for a response. If you have SMA Syndrome and you read this, please reply. I would like to talk about treatment options.

Thanks.

[jjs]

I don't know if I have SMA (actually I just found out about it) but I have some symptoms that seem to match what I've read about SMA in this forum and other places. Over a period of a year and a half I had 7 or 8 episodes with really intense abdominal pain and vomiting. Previous to that I hardly ever got sick. I didn't have any weight to lose (5'10" 165 lbs), but I lost about 10 pounds in the year after that first episode. Then I had a really bad episode and everything went downhill from there. I lost 20 pounds in three months and got severely anemic. I started having more frequent and more severe stomach pain that seemed to be associated with foods high in fiber but not always. The pain also changed from food poisoning or stomach flu like symptoms to a pain that came in waves increasing in intensity, frequency and duration and eventually vomiting. I had a bunch of tests - blood tests, endoscopy, colonoscopy, two CT scans (one with a tube down my nose and into my small intestine), stool and urine tests. They were initially looking for internal bleeding but did not find any. In fact the only thing they found was a slightly enlarged mesenteric lymph node and that I was extremely low in iron. Meanwhile my dad told me that when he was about my age (late thirties) he had some problems with constipation that were extremely painful and he's been taking Metamucil ever since. My more recent symptoms seemed to be how I imagined constipation in my small intestine would feel so I started on Metamucil. It was like magic. It completely took the pain away. Strange that high fiber foods seemed to cause the problem -- I can only assume that the psyllium husk fiber in Metamucil is somehow different. I tried a bunch of different types of fiber but nothing else really worked. So the pain went away (except for one time when I significantly increased the amount of Metamucil I was taking and that was extremely painful) but instead of gaining weight I was actually continuing to lose weight. I stopped taking Metamucil and started taking a product called Experience from a company called Awareness. It is taken in pill form and it has the same type of fiber in Metamucil plus some other laxatives and digestive aids. To fix the anemia I started taking a liquid form of iron called Angstrom Iron which is amazing -- the particles are so small they don't have to be digested so I have not noticed any side effects of the iron at all other than constipation if I take a huge amount of it. I'm still a little anemic after taking the iron for a few months but significantly better. Last thing -- I have always been lactose intolerant -- milk stops me up, gives me acne and diarrhea and blood in my nasal passages (strange I know). So I was having constipation taking the Experience and the Angstrom Iron and I wondered if milk would still have the opposite effect. I started eating ice cream again and have not had any of the symptoms I used to have. Reducing the iron slightly fixed the constipation. My conclusion from all of this is that I have always been somewhat iron deficient and prone to SMA. At some point something triggered the SMA problem and the iron deficiency got even worse because of changes I made to my diet to try to prevent the pain. I also may have had acute pancreatitis (during the episode that occurred right before I got anemic) which may have further inhibited iron absorption. I have read that iron deficiency can cause lactose intolerance -- that may or may not be true but it would explain why dairy doesn't seem to bother me any more. In a few weeks I have gained back about half of the weight I lost. Going forward I plan to continue to take the iron supplement at a maintenance level. After I am back to my normal weight I'll try stopping the Experience. Hope this helps someone!

[smiller11264]

Hello,

When I first read this post I had a moment of shock. I have Superior Mesenteric Artery Syndrome and realizing that there were others out there who have it as well is such a relief. I personally, spent over 3 months in the hospital and lost a combined weight of around 35 pounds. However, I think the main reason was because the hospital had difficulty in identifying what was actually taking place, as SMA is pretty rare. I would imagine having Ciliac's disease as well would compound the situation. Do you have a nutritionist? Perhaps your doctor can suggest one to you? Supposedly certain foods can worsen the symptoms ( in your case this may be even more pertinent.) I would highly suggest making an appointment to see your doctor and find out about seeing a nutritionist. Superior mesenteric artery can be a severe condition in left untreated and we want you as healthy and happy as possible Please update if you can. On a personal note, I hope everything turns out well for you. This is a fairly unusual syndrome but I know you are strong enough to get through anything. Best luck!!!!