Monday, July 22, 2019
Home / Power Stories / Kristina’s Story (SMA Syndrome)

Kristina’s Story (SMA Syndrome)

Sharon's Story SMASHi, my name is Sharon. I am a mom. First, let me say I admire all of the girls that have shared their story! My daughter, Kristina, is 20 years old and has been vomiting multiple times per day since February 26th. This happens every time she eats, not to mention the severe abdominal pain she struggles with. We have been to the ER, seen several gastrointestinal doctors, had an endoscopy, and she was told her throat was irritated (no joke, she’s been vomiting every day for 3 weeks).She was told to take pantoprazole and come back in a month.

She finally had a CT scan with contrast which was abnormal, and there were signs of Nutcracker Syndrome and SMAS. They said if the patient was symptomatic of these, an Upper GI should be done. She had an Upper GI, and apparently the person didn’t know how to do it because after a surgeon reviewed it, he said the images were poor quality, and he couldn’t conclude whether or not my daughter has this rare illness!

At that time, we decided to seek a second opinion. April 9th, we went to Duke University Medical Center in North Carolina to seek another GI doctor’s opinion. My daughter was scheduled for an Upper GI on April 16th. We have received the results from that and were told it was normal. Although it took the barium a lengthy time to go through, it was within normal limits. So, that still leaves us not knowing if Kristina has this or not! The doctor’s plan is to put her on a low dose anti-depressant. Not for depression, but to help with pain, nausea, and vomiting.

If anyone has any advice they can offer on this process, that would be great. Or if anyone has had both Nutcracker Phenomenon and Superior Mesenteric Artery Syndrome, we appreciate anything you can share. Is there another test option that is more specific? Has anyone been on an anti-depressant for this? This is so frustrating and heartbreaking, because I see her throwing up 15-20 times after she eats, and I can’t do anything to help her. Keep in mind, she has been vomiting every day, even if she just eats applesauce. She can’t work because she has to go all day without eating or drinking. She has lost 10+ lbs since Feb 26th. Apparently, something is getting through because while she feels dehydrated, she isn’t severely dehydrated. I don’t understand how a CT Scan can be so abnormal and all other tests be normal.

Thank you so much.

Sharon
Virginia
Submitted 04/20/2015

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 story 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.

Check Also

Kayla

Kayla’s Story (SMA Syndrome)

Hi, my name is Kayla. I am battling SMA syndrome and believe that I am …

26 comments

  1. Brigitte Estelle Gaudreault

    Dear Kristina,
    Dear Sharon,
    I wrote about my sister in Lymphoma section under Diane Gaudreault, I myself have no health issues but feel the need to want to hug you for being a great courageous loving mother who wants to help her daughter in any way she can .
    Being a mom also, I would fight for an answer ! Please keep reaching out to all on this webpage , you have the capability to write so well and the empathy for others reach out and keep writing we need heroes like you Sharon !
    Sharon , Kristina , both of you fight strong and fight like a girl (s)!
    Good luck for your search may patience , peace of mind and meditation (whether infront of a sunset or alone in a bathtub, meditation is a moment of silence to strengthen your thoughts) , be with you on this journey .
    With love from Québec, Montréal Canada
    BRIGITTE ESTELLE XXX

    • Dear Brigitte,
      Thank you for the compliment and positive energy. This is so very frustrating, to have your child go all day without eating only to have her eat Easter dinner, and within 15 minutes she’s throwing up numerous times until the pain in her stomach subsides. Unbelievably heartbreaking I tell you.

      I will read your message to her..she is a tough little cookie and through all this she still manages to smile. That’s what keeps me going..we will continue to fight this battle together, strong and courageously. I read your story, how courageous of you to share. Kristina is the youngest of 4 sisters and what a blessing that you have written us. Take care and thank you again.

  2. Hi Sharon, I’m so sorry your daughter is going through so much. She might have a slight kink in her intestines. That might be why the test show abnormal but yet didn’t pick it up. It might be small. Don’t laugh and don’t be upset when I say this bit my dog had that problem. The doctor did a test and the stuff went through so he didn’t think he had a blockage. It got worse so he had to do exploratory surgery and found a piece of elastic he ate was wrapped around his intestine but not so tight that the liquid from that test couldn’t get through. Take your daughters test a don’t stop till you find a doctor that cares.you have to be your own advocate. I’m battling cancer and I know these doctors are not God and sometimes you just have to be persistent. I think she needs a mri. That test d how more thing in detail or have thst test run thst wasn’t clear. She may end up needing the surgery. Sound like her intestines might be kinked. She gets a little down but food is to much for. Please demand what you want and don’t stop till you get it.

    • Hi Robin,
      Thank you for commenting. I too think she needs an MRI”. The new Gastro dr we saw at Duke however, was concerned with the amount of Radiation that Kristina has been exposed to already. We did have a surgeon look at the abnormal CT scan and show us on these images on the screen. He asked her if she had ever seen her insides before and she told him no, so he proceeded to point out the images of nutcracker with the left renal vein pushing on the deuodenum as well as the Mesenteric artery doing the same thing. He said he most definitely couldn’t say she didn’t have it. She has started an antidepressant that is used to treat IBS and other gastro issues and hopefully that will eleviate something. As I said, she’s a tough little cookie and is trying to get back into a normal routine. It could still be a little kink. She was going to the gym and doing different exercises with and without weights, ab crunches and stuff so, she could’ve very well twisted something. I hope you dog is okay. I didn’t laugh. I’ve heard of that happening quite frequently. Well you can bet if this med doesn’t help we will be doing something else. You are right we basically have to be our own advocate. I am scheduled for my mam in May and the older I get, the more worried I become when I have it done. I will certainly keep you in my prayers! Take care.

      • Thank you for your prayers. Please get your mam every year. I did and that is how I caught my yumor. It was stage 1 but it mastatized to 1 bone and my liver. Bone is okay but the liver isn’t curable. You just have to try and keep the tumors small. My dog if fine, thanks for being concern ed. That was along time ago. He is 16 years old now. I will pray you find the answers. Ask and pray to God for your answers. I know he helps me. I always seem to find my cancer early
        Please let me know how it turns out. I’m glad she is strong and has a good attitude. That is how I get through everything. I deal with 1 day at a time.
        I don’t think or try to wonder what will happen cause it may never happen I would drive myself crazy. Take care.

  3. Hi Sharon, I too have this problem. I don’t throw up every single time I eat but the pain is so bad that I wish I could. I’m unsure when it started I had a baby a year ago next month and stayed sick the whole time I was pregnant. Once I had him I expected it to go away and it hasn’t. My OBGYN did a complete work up to make sure everything was ok from that she then sent me to the GI doctor. When I first saw him he told me to take miralax 3 times a day I was probably constipated I was extremely frustrated with this because I was very regular. I did as he said because he after all is the specialist. At that point not only was I throwing up everything I ate but I had loose stools. I have had an MRI a ultrasound and a hidascan he thought it was my galbladder all came back normal I go May 8th for a colonoscopy and an endoscopy he will also be doing biopsies to determine if it’s a gluten issue with that being said I have tried every diet possible cut out all gluten and it still happens. I am on Zoloft for my stomach issues I can’t say that I feel it does anything. I hope your daughter gets answers soon. Tell her to stay strong and she’s not alone. 🙁
    <3 Summer

    • Summer, you are more than welcome to call me anytime. Kristina had an endoscopy with the hopes of finding an ulcer(s). The only thing we found out was her throat was irritated and she had slight esophagitis. Told to take Pantoprazole and come back in a month..(NO JOKE). That was on a Friday. Monday morning we were back at her PCP’s office requesting more testing. That’s when we decided to do a CT Scan WITH CONTRAST!! versus a colonoscopy. From that is where she got the ABNORMAL results..(FINALLY). At that point we went to another Gastroenterologist and also had an appointment with a surgeon. The new Gastro dr. is the one that told us the results were Abnormal and what they were. His suggestion was to talk with the surgeon to see how he wanted to proceed. In the meantime she was scheduled for an UPPER GI. That way the surgeon would have the images of the ABNORMAL CT as well as the UPPER GI. Upon her visit with the surgeon he looked at both…on the CT Scan he showed her the images of Nutcracker and the Superior Mesenteric Artery and could see she had issues going on. However, on the UPPER GI..when he looked at those, he said he didn’t like the quality of the images and they really didn’t show him what he needed to see. (lovely..wonder how much we paid for that). However, he could see where the barium flowed down the esophagus and then it just squirted through. That’s where the pain comes from in her stomach. The weight of the food or drink just sets there until it goes through, or it comes back up. So that was concerning to him. At the conclusion of the visit with the surgeon and after physically examining Kristina he said..it seemed highly possible this was what she has and even though its rare, he most definitely can’t say she doesn’t. So..from there we went to Duke for a second opinion. We were able to get her in fairly quick to see yet again another GASTROENTEROLOGIST. This time a woman. She was very concerned and was quite taken aback that no one here after almost 2 months of vomiting had even thought about putting Kristina on any type of medicine other than Reglan or Zofran..both of which were a waste of money. She said that she too wasn’t going to say it wasn’t SMAS and Nutcracker either. I think just because it is very rare, they don’t want to misdiagnose. So, they’d rather say “they can’t say it isn’t. She said that she is going to treat it as such and the first thing to do is treat it clinically-because just jumping in and doing surgery could really cause more havoc and create it’s own issues, is to put her on a RX that treats stomach issues. As I read you are already on. Keep her on the Miralax…which she’s already been doing the Magnesium Citrate once a week. We went back to her PCP and told her what the Duke doctor suggested and she prescribed a very low dose of Amitriptyline. She has been on it for almost a week and thought it was helping. She had a pretty good weekend, she only threw up a few times, however yesterday (Monday) was a completely different story. We are hoping that each day of being on the meds will show improvement. Hopefully the ENDOSCOPY and COLONOSCOPY will show something for you. If not, you might want to try a CT SCAN with Contract or a Gastric Emptying study. That will probably be Kristinas next test if this doesn’t work. But the Duke Dr. was concerned with the amount of radiation she had already been exposed to. With Kristina’s case. I feel like since we have seen it in Black and White, the surgeon has seen it on the images and verified those with Kristina and she is VERY symptomatic of it (even the Belching before she throws up) then I feel 100 percent sure in presuming she has this. A girl I work with put it like this. The doctors are looking for a horse..because that’s the typical way they are trained to think and in Kristina’s case she’s a Zebra. Eventually, they will come out of their Horse way of thinking and realize she’s a zebra. Good luck to you..please keep me posted. I will keep you in my prayers and feel free to call me. Take Care…Sharon

    • Hey summer. I have SMA syndrome too and I’m currently trying to start a family. I’m starting to get nervous about pregnancy. Do you think if having this syndrome won’t allow me to have kids? Because I’ve been thinking about how the baby pushes on all your organs and squeezes them together. Do you have any information about that? How was your pregnancy? You were able to have a baby.

  4. I have had sma and it was repaired in feb of last year. I started with it in april of 12 did same test didn’t find anything lost 65 lbs. I would be willing to talk to you about it and how they repaired it.

  5. Hi Sharon, Not sure if you still need info on this or not. but we’ve been through this! My daughter was finally diagnosed with SMAS in July of 2013. Im in NC as well. I can give you a list of Doctors that can help.
    Sincerely Jeannie Brown

    • Hi Jeannie,

      My daughter was just diagnosed with SMA Syndrome. You mentioned that you also had a daughter diagnosed with this condition in 2013. Has she had surgery? I would appreciate any information that you can give me . I’ve read about a variety of surgery options. There seems to be so much controversy about this condition – and how to treat it. Thanks in advance for any information you can offer.

      All the best,
      Nancy

      • Hi Nancy, please read my post to Jeannie. This is where we are to date. I welcome any information you can provide as well. I will say, the doctor she is seeing at Johns Hopkins is very open when it comes to SMAS unlike other physicians who have a completely different theory and diagnosis.

        Thanks in advance,
        Sharon

        • Hi! Is there anyway you could give me the name of the doctor you took your daughter to at johns hopkins? I believe I have smas but don’t know how to go about getting it diagnosed or who to go to! I am in nc but am more than willing to travel!

    • Hi Jeannie, thank you for responding. I have not been on in sometime so I apologize for just now replying to your message. We are in Virginia. After our trip to Duke showed no results and Kristina was put on the antidepressant Amitriptyline we decided to seek help elsewhere. She still vomits every day, has severe abdominal pain and nausea and is down to 102 lbs. We are currently going to Johns Hopkins. She has had another Upper GI, which resulted normal. Her doctor has requested another CTScan w/Contrast to compare to the first one she had that showed the SMA. Therefore we still have no official diagnosis. Our next appt is 9/2 where she will have the CT and consultation with the doctor. Did your daughter have surgery, if so, which procedure and was it open or laparoscopic? She is now becoming very frail, her legs are very weak and her hips are hurting. I have had to take her to the ER because of dehydration. Very much interested in your experience and hope your daughter is doing well. Thank you in advance for any information you can provide.

      Take care,
      Sharon

    • Hi, I was just told that I need an extensive GI workup because my CT scan suggests that I have SMA syndrome. Any information or direction, dr names, would be helpful and greatly appreciated. Thanks so much!

      Thanks,
      Jaclyn

      • Hi,thank you very much for your help,i have this problem also now,other imaging suggest SMAS but my barium meal test seems to be negative and i’m so depressed because i have been in pain for so long and i’m ready for surery,thank you

  6. Hello, first off I am so sorry your daughter is goimg through.this. I was by my mothers side while she went through this pain and same symptoms for over a year. In and out of hospitals, misdiagnosed so many times, then finally was diagnosed a month prior to her passing. Im not trying to acare you but you HAVE to get another opinion. My mother suffered so bad. Had a surgery to put a stint in and eventually during that hospital stay about 9 days after her first surgery and multiple intibations and a trachea put in she had to be.rusged for an emergency surgery.for yet another blockage and by time they.got to her intestines they were already dead and there was nothing they could do for my mom, she passed away 5/29/2015. I heard about a doctor at Cleveland medical clinic that handles these types of patients. I dont have that info.handy but it may be worth looking into. I pray for your daughter and your family.

  7. Hi there, I am 21, I was recently diagnosed with SMA and MALS Syndrome. I received this diagnosis through ct w/contrast and a sonogram (with quite a few lengthy words before it). Your daughters symptoms sound exactly like mine. Has she had a sonogram… Was there any mention of MALS…Because like your daughter after consuming any amount of food the pain begins which can last 1 to 3 hours. I visit with a Vascular Surgeon on the 14th of Sept., if he has important information to offer I will certainly pass it along to you. Best of luck to your daughter, tell her to stay positive and know that she is not alone.

    • Hey there Jessica, thank you for your response. There has been no mention of MALS. I’m not sure what that is. What hospital are you going to? I am so sorry that anyone has to experience this. I will pass your message to Kristina.

  8. Hi Sharon,
    I have a 17 year old son with SMAS. He was diagnosed a year ago. It took 3 months of vomiting everyday for his PCP to finally throw up his hands and send us to a specialist. When he was diagnosed my son cried and hugged the Dr., he had been in so much pain for so long and no one understood. After upper GI, lower GI and CT SCAN with Contract they immediately put him on an NJ tube. He had gone from 6 ft tall and 140 lbs to 120lbs. He looked awful. I want to tell you to get help soon. It not only affects our loved ones physically but being sick like this is a mental challenge. After months on the feeding tube (and missing a lot of school) he started having panic attacks. He slept 18 hours a day some days. He lost his spunk. It has been just as hard to deal with his mental health over the 6 months as it was to get over the SMAS. At a very low point he started cutting himself.
    We were back last week to the specialist because my son got a sinus infection and the SMAS came right back. He lost 10 lbs in 8 days. He is on weekly weight checks with the threat of that feeding tube again. It is so nerve racking for me as a Mom, I would give anything for this to go away. We live in the Denver area and are so thankful we found an exceptional pediatric gastro. dr.. He never speaks of surgery but we all know it might have to be our next step.
    Chin up, we Moms are strong. I will bookmark this page to keep up with your story. Sending love your way.
    Cheryl

  9. Hey Sharon,
    My name is Abigail and I’ve been diagnosed with SMAS since I was 13-14 years old, I just want to say that it does get better and there is a learning curve. I saw a lot of doctors when it first pronounced itself when I was 10 years old. I was away from my family and I had severe abdominal pain, and I felt like I could vomit at any moment. I could barely stand, I was shaking, and I couldn’t eat or drink anything for an entire day. I saw a lot of specialists and they all tried to help me through it, and over the years I’ve learned that I’m really the only one that can help myself because I can learn what to eat and what to stay away from. I’m not gluten free, and I’m not lactose intolerant. I can’t eat certain foods because of the SMAS. However, I’ve found ways to keep the pain at bay, and when the pain does pronounce itself I just do somethings that help with my pain level. Im turning 21 this year and it’s taken me a little bit to figure everything out but I do have limits. If you or your daughter has any questions I’d be happy to help.

Leave a Reply

Your email address will not be published. Required fields are marked *