I am an 18 year old female and was just diagnosed with SMA syndrome last October of '08. I have had issues eating my entire life, but was only hospitalized last October.
Along with my SMA, I also had developed pancreatitis due to infection of waiting too long to see a doctor. I waited 3 days, (I thought I just had the flu), and I was constantly vomitting without being able to hold anything down.
I eventually went to the emergency room. They put a tube down me to suck everything out, and I filled up about 5 liters of gastric contents almost immediately. My stomach had distended to 5 thimes it's size, which is the most unimagineable pain. My blood sugar was over 400 due to the pancreatitis, which caused me to also be quite delerious.
I was hospitalized in two hospitals, (I was sent to Children's Primary in Salt Lake City since at the time I was 17 and they had specialists there.)
The gastrointestinal board of Salt Lake City and Ogden Regional diagnosed me with chronic and severe SMA syndrome, which coupled with the pancreatitis was even more rare. (Rare enough to where they had never heard of it.)
I had a PICC line inserted and was fed that way for a while, but eventually got back up to regular foods after a few weeks. They thought that the fat pad surrounding the superior mesenteric artery had deteriorated due to my low weight of 85 pounds. Which sounds like an extremely low number, but I am only 4"11 and am actually on the higher end of my BMI (body mass index) chart. (They accused me of being anorexic.)
I was again hospitalized this April of 09 for the same issue, only a week after having a test that said I was "getting better". I had gained weight as they asked, and I was now between 90 and 95 pounds, but yet I was once again hospitalized.
I had the same board of doctors confront me, and I had the same routine. PICC line, and then regular foods. It was deja vu, even though I had gained weight.
They determined that I have misproportioned arteries throughout my body, (some larger than should be and some much smaller). And they also decided that the chances are that I've never had the fat pad to begin with, which explains my picky-ness and vomitting after eating too much throughout my whole life.
I had just recently been telephoned by my primary doctor (whom I see once a month for follow ups) on Hill Air Force Base, who says that my SMAS is NOT fixable by surgery. He didn't exactly explain why, and says I may just "grow out of it".
How am I supposed to grow out of a problem I've had since birth?
They told me I am practically doomed to living the rest of my life in and out of the hospital, doomed to the same routine of constantly being sick, weak and tired, and eventualy not even being able to feed myself. (as it will get worse and worse over time.) They say that if I don't grow out of it, I'll be lucky to hit 40.
I don't believe them, and frankly I am quite angry with how this is being tossed aside. And I'm scared.
I don't see how surgery CAN'T help me.
If ANYONE has any advice, tips, or ways to get these lazy doctors to change their minds, please tell me.
I REFUSE to let this be my fate, of rotting away in some hospital bed somewhere and not chasing the many dreams I have running around in this young brain of mine.
Thank you so much.
And to all of those who have been diagnosed or have loved ones diagnosed, good luck.
Along with my SMA, I also had developed pancreatitis due to infection of waiting too long to see a doctor. I waited 3 days, (I thought I just had the flu), and I was constantly vomitting without being able to hold anything down.
I eventually went to the emergency room. They put a tube down me to suck everything out, and I filled up about 5 liters of gastric contents almost immediately. My stomach had distended to 5 thimes it's size, which is the most unimagineable pain. My blood sugar was over 400 due to the pancreatitis, which caused me to also be quite delerious.
I was hospitalized in two hospitals, (I was sent to Children's Primary in Salt Lake City since at the time I was 17 and they had specialists there.)
The gastrointestinal board of Salt Lake City and Ogden Regional diagnosed me with chronic and severe SMA syndrome, which coupled with the pancreatitis was even more rare. (Rare enough to where they had never heard of it.)
I had a PICC line inserted and was fed that way for a while, but eventually got back up to regular foods after a few weeks. They thought that the fat pad surrounding the superior mesenteric artery had deteriorated due to my low weight of 85 pounds. Which sounds like an extremely low number, but I am only 4"11 and am actually on the higher end of my BMI (body mass index) chart. (They accused me of being anorexic.)
I was again hospitalized this April of 09 for the same issue, only a week after having a test that said I was "getting better". I had gained weight as they asked, and I was now between 90 and 95 pounds, but yet I was once again hospitalized.
I had the same board of doctors confront me, and I had the same routine. PICC line, and then regular foods. It was deja vu, even though I had gained weight.
They determined that I have misproportioned arteries throughout my body, (some larger than should be and some much smaller). And they also decided that the chances are that I've never had the fat pad to begin with, which explains my picky-ness and vomitting after eating too much throughout my whole life.
I had just recently been telephoned by my primary doctor (whom I see once a month for follow ups) on Hill Air Force Base, who says that my SMAS is NOT fixable by surgery. He didn't exactly explain why, and says I may just "grow out of it".
How am I supposed to grow out of a problem I've had since birth?
They told me I am practically doomed to living the rest of my life in and out of the hospital, doomed to the same routine of constantly being sick, weak and tired, and eventualy not even being able to feed myself. (as it will get worse and worse over time.) They say that if I don't grow out of it, I'll be lucky to hit 40.
I don't believe them, and frankly I am quite angry with how this is being tossed aside. And I'm scared.
I don't see how surgery CAN'T help me.
If ANYONE has any advice, tips, or ways to get these lazy doctors to change their minds, please tell me.
I REFUSE to let this be my fate, of rotting away in some hospital bed somewhere and not chasing the many dreams I have running around in this young brain of mine.
Thank you so much.
And to all of those who have been diagnosed or have loved ones diagnosed, good luck.
Loading...
Thank you for sharing your tragic story with us. I am so sorry that you have to go through all this pain and suffering at such a young age, when most kids your age are enjoying growing up into adulthood. I admire your courage to fight back against this disease and the negative opinions of your doctors. I wish you the best. Are you now on daily insulin injection to control your blood sugar?
Loading...
I'm curious as to why your doctor seems to think that you're going to 'grow out' of this issue. In times like this when it seems that your doctor is giving you the brush off, the best tactic you can take is to seek a second opinion. Ask for one from your doctor or search for one yourself, because it sounds like there's a little more explaining to do to you regardless. I'm a little angry that they didn't explain things to you more. Keep us posted!
Loading...
I was diagnosed with SMA 11 years ago. I had a surgery called a duodenojejunostomy. My mother was also diagnosed with SMA as a teenager and had a similar surgery. Do some research and take it to your doctors! You will never be perfect after surgery but you will be able to live a close to normal life. I still have problems like gastroparesis but that's nothing compared to what I know you are going through. Stay strong and be pushy! I'd be glad to talk to you more about my SMA. _[removed]_ Good luck!
Loading...
My son is 18 and diagnosed in DEC 08. He has had TPN then J-tube feeding Those failed. Then he had a gastrojeujostomy in FEB 09. That helped for a while but he is still having severe pain and vomitting. He has been hospitalized 6 times since this started. We have been to two major hospitals and lots of different doctors. We are researching all options and hopefully we will find a better answer. He needs frequent hospital visits for fluids and potassium bolus. All I can say is keep researching and try other doctors.The surgery he had supposedly works on 7 out of 10 cases but unfortunately his helped some but not enough. I have just found out about some different medical interventions that might help. I will write you back if they are helpful. Good Luck!!!! You have to be your own Patient advocate to find answers
Loading...
Ask your doctor to prescrible 25-50mg of Elavil (generic name amitriptyline) nightly before going to bed for SMA. It numbs the parasympathetic nerve endings and will stop the nausea and stomach pains in just a few days. You can send me an email at if you would like to hear my horror story about SMA and how a wonderful doctor saved my life.
Loading...
so my child is 15 and her name is stevie fawn .she has been also told by 11 diffrent doctors that she has S.M.A.S.but they just keep doing the samething to her they are doing to you .and theirs not a thing we can do about it .the only diffrents is after they almost killed her 2 time by over doses and by leting her lose 8 pounds by trying to rule it out .they put her back on a feeding tube and got her up to 1 pound more then when she got there. THEN they told us to go home she was fine and turned( me) her mother into child sevices .and all this after being in 3 hospitlas for 2 months and haveing all the test to prove that she has it .how can a doctor that has taken an oath to do no harm send her home sick .just because her mom put him on front street about there mistakes. they must be trying to discredit me before i can hang them for there BAD.im a God fearing women .i would have never gone there.UNTIL now im getting an atterney .in the hopes that someway we can get help for her.they say im trying to get unnecssary medical help for her after being sick with this for 9 years .its (UNNECESSARY) sometime its really hard to just do what god would do .when your child is telling you that shes in so much pain and she know she going to die she fill that shes dieing . we will pray for you and hope for the God above to help you .if you would like to talk with stevie you can call her we can pay for the call (530)876-1369 thanks and God bless:)
Loading...
one of the "guests" here posted that a doctor saved the patient's life. "You can send me an email at if you would like to hear my horror story about SMA and how a wonderful doctor saved my life." i'd like to communicate with that person. could you please contact me?
thanks
***this post is edited by moderator *** *** private e-mails not allowed **
Please read our Terms of Use
thanks
***this post is edited by moderator *** *** private e-mails not allowed **
Please read our Terms of Use
Loading...
hi...I found this site while looking for diets following SMA surgery. I had trouble getting this diagnosis for over 5 years (following a previous surgery). At any rate, today is my first day home from the hospital and my doctor was wonderful in discovering the correct diagnosis and surgery has been quite successful. The young woman who is 18 and now going through this situation I suggest she contact Legrand Belnap. He operates in Salt Lake City, specializing in cases other doctors will not touch. I know the roll of its all in your head, tried every medication, and yes even was implied that I was losing weight on purpose.
Loading...
My daughter has had this surgery and still to this day she has digestive problems, pain , and nausea and low potassium and needs to go in the hospital every month I am still looking for some answers too.
Loading...
I was sadden by the O.Ps post.... Because I know exactly what it feels like to have SMA,.. In fact its hard to remember when I had 1 DAy without a Problem..(symptom) that didn't involve SMA! OMG,. it's sooo hard when the mind is telling me I'm hungry but then my Body is aching not long after I've tried a spoonful of food. So Debilitating, NOT ONLY physically and mentally BUT emotionally draining too. AND I'm ALWAYS TIRED.OMG..that's as regular as the pain!
. Yes it nasty to feel your insides swelling to a point you literally feel like you're going to burst. THe Pain gets ssooooo bad.. and that's without the other reoccurring problems,..ongoing nausea and vomiting.// I've been going down this (long,..winding)road for over 2 years,..and it feels like it's been the longest 2 years of my life.
I've had nearly every tube that can be attached to a Human Body. (AS other people with SMA that I've spoken to have also)
..I've had sooo many NJ tubes that on my Travel to Hospital with a Blocked feeding tube,.I pull them out on the way just to burp some air,... (knowing they would have to replace it cause it was blocked anyway ,..because the line can't be flushed because it was soo blocked..even warm ater with a small bit of baking soda didnt help.etc.So many tubes,..hospital visits ,..xrays,..tests etc,. I gave up counting ages ago
I'm in no means the sensitive type (who cries over spilt milk) either,.. very strong willed indeed. But this SMA is a real kick in the guts. No Punn intended...(cause it's NO joking matter). I feel bad for everyone with SMA.. tho we are true fighters,..and warriors. I'm glad we can all communicate about this nasty disorder via the internet however,..knowing there are other people out there somewhere ,. in the world going through similar problems,..if not the same ,..indeed. I wish I had something positive to say,...but at this stage I don't.Sorry ;(
. Yes it nasty to feel your insides swelling to a point you literally feel like you're going to burst. THe Pain gets ssooooo bad.. and that's without the other reoccurring problems,..ongoing nausea and vomiting.// I've been going down this (long,..winding)road for over 2 years,..and it feels like it's been the longest 2 years of my life.
I've had nearly every tube that can be attached to a Human Body. (AS other people with SMA that I've spoken to have also)
..I've had sooo many NJ tubes that on my Travel to Hospital with a Blocked feeding tube,.I pull them out on the way just to burp some air,... (knowing they would have to replace it cause it was blocked anyway ,..because the line can't be flushed because it was soo blocked..even warm ater with a small bit of baking soda didnt help.etc.So many tubes,..hospital visits ,..xrays,..tests etc,. I gave up counting ages ago
I'm in no means the sensitive type (who cries over spilt milk) either,.. very strong willed indeed. But this SMA is a real kick in the guts. No Punn intended...(cause it's NO joking matter). I feel bad for everyone with SMA.. tho we are true fighters,..and warriors. I'm glad we can all communicate about this nasty disorder via the internet however,..knowing there are other people out there somewhere ,. in the world going through similar problems,..if not the same ,..indeed. I wish I had something positive to say,...but at this stage I don't.Sorry ;(
Loading...
I can SO relate to what you all are saying/ going through. I'm a 30-yr old female diagnosed w/ SMA Syndrome back in May 2010. It
took a year 1/2 and 3 different GI doc's b/f I was finally diagnosed.
I've had 2 surgeries for it. It's been the biggest roller-coaster of
my life! Sometimes I think I'm getting better, I'll have a few days
in a row where my pain isn't that bad and I'm able to eat "somewhat"
decent and I'm able to actually do things (like go on a walk, hangout
w/ friends, etc.).... Then all of the sudden...WHAM! The pain's back
and if I'm not vomiting, I'm at least extremely nauseous :-(
I'm
on so many medications it's CRAZY! I hate it! They make me so tired
and I can't do the things I love to do! I used to work-out at the gym
4-6 times a week, and it made me feel so good! Physically and
mentally! Now, between the combination of the meds and not being able
to eat hardly anything, there's absolutely no WAY I can work-out (I'd
probably pass out if I tried, lol)...
Anybody
else out there been dealing w/ this for awhile? What have your Doc's
done? Anything helping? I'd love to hear other people's stories
and/or advice! Thanks!
***this post is edited by moderator *** *** web addresses not allowed***
I would LOVE it if you all would check it out and share your stories as well! Maybe by sharing our stories, and what works and what doesn't work, we can HELP EACH OTHER!! God Bless!
Loading...
Thank you for posting minderella I can relate to your situation also. You're SO RIGHT about the Meds. I'm on plenty also.. I need them for the pin ,..nausea/vomiting etc,..but I'm always feeling drained and tired.. even if I get 8 hours sleep..which is rare for me,.. as i wake up often. either way.. I'm tired every single moment I'm awake,.making it very difficult to go out...even pay my bills. Other people around me..who should have be supportive are not. I have lost many friends and had some major falling out with some close family members because of the strain it's put on me and others...or others not being able to relate to how it feels to have SMAs... and ..thinking it should be a walk in the park.. cause there grass is always greener and they are very ignorant. Not to worry tho...gotta keep the chin up as much as possible.
Loading...
Hi I have had problems since I was 13 years old and it took my doctors 6 years to eventually find out I had SMA. I am now 20 years of age. I had a big operation last year where my surgeon stitched my bowel onto my stomach however it hasnt helped much. What have u had done. As I don't know anyone who has SMA. And no one really understands what we are all going thought. Would be great to chat x
Loading...
My son is 30 and has had sma for 10 years. We cant even find a Dr. that has ever herd of this. Yesterday a Dr percrided Elavil.We are hoping this will help!! I would love to hear your story and hope we can find a DR. to save my sons life.
Loading...