I woke up a few weeks before my 12th birthday and just wasn’t feeling well. This continued for a month or so and I began having a lot of pain every time I would eat and would throw up everything I ate. My parents took me to the ER countless times, almost every pediatrician and doctor in our town. No one could tell us what was wrong. They decided I was just anorexic and it was all in my mind. By this time, I had went from an 85 lb chunky and athletic 12 yr old to a 58 lb child who couldn’t walk anywhere because I had seizures from being so tiny. I was sent 4 hrs away from home to Atlanta, Ga to their children’s hospital. When I got there, I finally heard the diagnosis. Superior Mesentery Artery Syndrome. What in the world is that?, I thought. Well, it is when the mesenteric artery literally kinks your duodenum ( small intestines ) like you would a water hose. It doesn’t allow anything to pass through so you vomit up any and everything you eat and essentially this causes your body to starve itself. I was relieved, I finally had an answer, or so I thought. The doctors there said if I got a NG tube and gained some weight I would be fine. So this is what we did. After a few months and no real weight gain I was switched to a PICC line and had TPN feeds.
Of course, it didn’t help either, so back to the NG tube. After a 109 day stay in Atlanta they discharged me with a kinda good luck we hope you don’t die diagnosis. I still was in constant pain. I still couldn’t eat and at times I wanted to give up. I spent many days back in the ER from the pain. On one of my visits they called a pediatrician in who happened to be friends with a surgeon in Macon, Ga. He looked at my diagnosis and said I think Dr. White could really help. My parents immediately made me an appointment and I was soon in the car on my way to Macon. Dr. White ran his tests to confirm SMA Syndrome and scheduled my surgery for January 20, 1997. Surgery was scary but they successfully moved my intestine away from my artery and I was on my road to recovery finally. I lived life normally then. Could eat anything I wanted and no pain. That is, until mid September hit and all the symptoms were back. So, back to Macon I go. My second surgery was scheduled for September 29, 1997. This time I had aduodenojejunostomy. This created an alternate opening in my intestines and rerouted where food should go. This time I didn’t recover as much. However, I was then on the way to living life as normal as I could knowing I have a disease that won’t ever go away. Everyday since that day in 1996 has been a struggle for me, but it’s a struggle that’s all been worth it.
Today, I am a happy and somewhat healthy almost 29 year old. I am still really skinny ( I’m about 90 lbs and 5 foot 2 in tall. ) I still have SMA Syndrome and always will. There is no cure. Doctors only try to make you comfortable and manage your symptoms. I still can’t eat a full meal and still have at least 30 mins of pain after anything I eat. I’ve also since had a child who is 8 years old and she is the reason I get up every day. I have endometriosis and I get chronic migraines. Despite all that’s happened to me and the countless times I have asked God why me, I plan to never just lay here and give up!
Angela
United States
Submitted 4-25-13
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.
good luck to you…I think you have had your fair share
Hi,
I too have SMA. I have been sick my whole life but only diagnose now for 3 years. I am now 36 and still struggle. I almost lost my life to SMA when I got down to under 70 pounds. My husband at the time (who I lost because of this wonderful disease) was Military so I was under Military Health care. I had a wonderful 2 years of NG tubes, PICC lines, and a central line for TPN. Well finally they did a major risky surgery that was supposed to magically fix everything. I came out with a J-Tube for feedings as I still could not eat. Well my wonderful husband left me because I am considered damaged property thanks to this cursed illness so I lost my medical care and have been unable to see the docs who took care of me. I have since met a great man that sticks by my side through thick and thin. After the surgery, I did well for awhile. I have been eating food now for about 7 months, about 2 months ago I started feeling sick again and now I am blowing up just like before the surgery. I am sorry that you have to deal with SMA but relieved to know that I am not alone in this battle. I am having one of my worst nights for feeling sick so I am going to try to find a new Doc to help me through this. I wish you all the luck in your battle against SMA and you will be in my thoughts as I fight my own battle against it.
i think we r not differ alot from cancer patients but we r more struggling as we spent time not knowing what is happing to us this time for me was 7 years 7 years i dont know psychatric drugs ruined me its a terrible disease not like any diseases its a fucken disease fucken doctors fuck anything
I would love to talk to you. My 12 year old daughters story is so familiar to yours. She just got her NJ tube 2 weeks ago. Like you, they told us she was anorexic and it was all psychological. I had her read your story.
I was also diagnosed with SMA Syndrome.over the summer. I had the laproscopic duodenojejunostomy surgery in early September and even after 2 months thsnks post surgery the bloating and inability to eat all I want still persists. I am still undergoing many test such as endoscopy, CT Scan etc and they see no obstruction but doctors can’t figure out what’s causing the bloating and feeling of fullness.
I was also diagnosed with SMA Syndrome over the summer. I had the laproscopic duodenojejunostomy surgery in early September and even after 2 months post surgery the bloating and inability to eat all I want still persists. I am still undergoing many test such as endoscopy, CT Scan etc and the doctors see no obstruction but doctors can’t figure out what’s causing the bloating and feeling of fullness.
There is so little information on this, and thankfully there aren’t a vast number of patients with SMA. However, it would be of some comfort to network with patients who.do have SMA. To all the patients and their families battling this disease you have my utmost respect and support! I am struggling as well, so I do get it. POWER THOUGHTS TO YOU ALL!!