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I have sma syndrome 😢😢pls help me I'm 25yrs old female.... I'm suffering from peptic ulcer and sma syndrome. And phrygian cap... What i doing NOW???? I'm from Bangladesh

Here is how it is going for me in two weeks I had seen two primary care doctors and 1 urgent care visit and been discharged twice from the hospital saying I had viral tonsillitis which was likely since I was in weak shape but I knew something was more wrong. I was admitted the third time after losing 7 pounds in a week even though I had only been eating 300 calories less. I have lost 21 pounds in a year from my all time heaviest weight of 130 and I’m not that short at 5ft 10in. I was admitted in the hospital the nurse was really heavy she ran me into a room and I had first an ultrasound nothing appeared then a ct scan without contrast and ct scan with contrast which showed SMA syndrome and a Nurse practitioner knew what it was but never expected to see it and she showed her colleagues and they were in shock and they brought 5 specialists of the same speciality and they were all in 100 percent agreement that this is SMA. I also, had mri scan with and without contrast and it showed up on those tests too. The worst part for me is that I can’t vomit easily so I constantly have nausea and it just sits and the cramping is agonizing and I can tolerate a lot of pain and I have tried the strongest anti nausea medicine and even that makes me nauseous. The problem too is my kidneys really work extremely well so I have to urinate a lot which would leads to dehydration normally but this makes this condition much harder because I’m drinking 5 liters of liquid a day and close to dying of dehydration according to lab tests and I was only given two bags of saline over a 3 day hospital stay. I been fortunate I can still tolerate eating normal food but with limitations and I cannot eat lunch so I’m forced to eat two large meals to keep up with my calorie goals which is 3,000 so I eat a 1,500 calorie breakfast and a 1,500 calorie dinner and in the meantime I have not only deal with the usual symptoms but hypoglycemia as well because I forced not to eat lunch I have gone as low as 42 on a random blood glucose test and that came I’m lucky I could still tolerate glucose gummies. I have gone in two years from being a very fast sprinter to struggling to get out of bed and this is no depression because I feel very happy and even laugh and be extremely silly but still be in excruciating pain. At least if I can’t get tpn I hopefully can get iv fluids because I’m nearly dying of dehydration and will see the gastroenterologist in 3 weeks with a urgent referral and in the meantime been given orders if vomiting lasts more than 12 hours to return to hospital or if 2 more pounds are lost in a week.

I just got diagnosed with it and I have suffered for over 6 years. It's horrible. Hoping to feel better soon.

🗣️ 🩻I feel so lucky! Ive had unusual side pains for 4 years. I am not a huge weight loss story, im the opposite. In a way! I am 5’ 11” amd I weighed 135 at my heaviest. Today i’m at 125. No matter how much I eat I can’t gain weight, it’s been a lifelong struggle. One i’m sure many would love to have. To me, it’s an issue but I can truly understand my neivety when I complain abiut being underweight. Contuinuing! So, I had 4 years of upper right abdominal pain. Dull at most times, occasionally sharp. Sometimes shooting kidney pains but less than 10 in the past 4 years. Usually it feels like a baby foot under my right rib. (My wife and I were very close during labor that’s how I know the feeling. After our boy was born, he started shoving his foot into my rib also, it was a cute coincidence cause we’ve previousky bonded over this.) I had symptoms of nausea (not severe, but i think i became used to it and others would call it moderate.) Brain fog constipation (maybe 5 times MAX in 4 years) Back Aches Legs felt like they were being constricted, most days it got hard to walk without frequent breaks. 10 minutes of standing felt like 2-3 hours Testicle pain randomly Rib pain (or so we thought that could be the cause) Etc. (I want to give full list but i dont believe all my symptoms come from SMA Syndrome) I went in to ER after 3 year because i was CONVINCED my liver had chirossis. I take tylenol and hydrocodone daily for my back injury. I semi-believe my back injury damaged my spine L1-4 and thats what caused SMA Syndrome, but doctors are convinced its cause im underweight and say my backs fine even though I have daily pain ever since I got ran over by a car. Go figure, im totally fine from that! Lol SMA WASNT DIAGNOSED AT 3 YEAR MARK They did blood test, xray, and ultrasound. Liver not swollen or chirossis, no broken bones or rib abnormalities (or so they thought) and everything checked out except a bilirubin level right at the max halthy amount. (If bilirubin limits are for example 0.5-5, i was at a 5.1) My side used to hurt every few months, than weeks, then it was daily. Yesterday, its been a year since last checkup so i went in because i developed panic attacks from my random symptoms everyone thought i was making up! The doctor gave me full panels of blood test, urine test, and finally I urged them please do a CT scan. They complied and I waited 2 hours womdering where my nurse and doctor were. Finally, they came and got me for CT SCAN. WELP, that’s when it all came to a beautiful end. The YEARS of anxiety and pain and discomfort. (I still have pain, but justified pain is so much sweeter than unknown origin pain! Lol) The doctor said I had a surprinsgly rare syndrome, SMA Syndrome. Also, I have an extra floating rib that I was told was a abnormality. He said “I missed it, your radiologist is the one you want to thank. I havent seen this in over 10 years, and it was with a patient who had extreme weight loss, NEVER in a skinny person.” They BARELY saw the issue. They were so intrigued they held council for an hour with other doctors out of state to get their opinion. I was so relieved. I KNEW immediately the chances of them finding this on my second ever DR Visit was crazy! I immediately was grateful. I felt so lucky. Im telling this story cause there’s no one i can talk to about it. Dont have many friends who care enough to listen to the story, but I know you guys going through the same might read this and get some hope or joy. Just reading everyones story is great! Gotta get back to work, i used my break to type this, forgot to eat but ehh the doctor said I have special diet now so tomorrow were goong to make a whole list and schedule dietician appointment. Theres a special way you gotta eat leaning forward, etc. so im excited to learn about how to get healthier. My treatment method was literally : Eat a bunch of high calorie soft foods! Yeah, i would love to do that ❤ I struggle so much with my weight and thisnwill nake my family take it serious. They were so surprised I wasnt making up my pains!

I was diagnosed with this recently and am so relieved despite how scary it is. I was probably suffering with this for years before I demanded a CT because I could tell something was wrong. Now I am fighting to get doctors to take my condition seriously because I cant get necessary appointments for MONTHS. I do not have months, but Im going to keep fighting for myself until the end.

Vivian, I’ve been wondering how you are. I had Mesenteric Artery Stenosis. I’m 5’9, I went from 185 to 100 pounds the day of my abdominal bypass surgery. I pray you had this surgery. I would have died without it. I hope you post again soon.

I was in the hospital for 3 weeks for my sma. I wasnt able to eat or drink anything by mouth.

They found out i had sma by a Ct scan.

My daughter has jusy been diagnosed with this. She is 15

Omg I've finally found out that I have this finally 3 years it took and 5 CT Scans later and down 150lbs I could feel my self slowly dieing I also have IBS and gastritis my guts would move like snakes my skin just hangs off of me I also gave up and did the home thing with a food diary for what set it off but it got to the point that I would wake up sick and my kids are why I went back I'm a mother of 6 and wanted to live long enough to see my babies all grown ❤ thank you for sharing I'm crying because I know what you been through having my surgery in 2 weeks throwing hearts in the air 😊

What is your BMI?

You probably won't see this but how did celiac cause smas?

I was diagnosed with SMA after 2 1/2 years of tests. Like you I was given so many different drugs it was crazy. It hurt so bad to eat. I lost 85 pounds and I’m 5’9, I was a shell in my own body. I had to leave my home town to get help. After finding the right GI doctor I was diagnosed quickly. I was sent to a vascular surgeon name Dr. Drougas in Roanoke Virginia. He specializes in this surgery which is hard to find. After meeting with him I was on his OR table 2 weeks later on March 31,2001. The doctor that assisted my surgeon told me “your case will haunt me for a long time.” Abdominal Bypass surgery is what saved my life. My 3 main veins were compromised. The arteries that feed into my stomach were all clogged so my body could not absorb fat. This is why we all lose so much weight. My surgeon rerouted my 3 main arteries using artificial veins. I spent 4 days in ICU and 4 days on a vascular wing. I know this sounds scary to others but this is the only thing that will save your life. I wasn’t able to eat until 6 weeks passed after surgery. This is not uncommon because a surgeon just did so much work in your stomach. After 6 weeks I ate again with no pain. I gain 30 pounds back and I feel normal again. I’m actually painting the main floor in my house. This would have never been possible prior to surgery. If you have a SMA please get the surgery but make sure you have an excellent vascular surgeon. The test that finally diagnosed me was a CT Scan with contrast. Sounds pretty simple but it was the one test my home town GI doctors didn’t do for 2 1/2 years. After being diagnosed my surgeon had to schedule a procedure where they go into my main vein between your legs. I felt nothing. After the surgeon confirmed there was no other option but Abdominal Bypass Surgery I was scheduled. Now I see my vascular surgeon once every 6 months where he does an abdominal ultrasound. This way he can make sure that blood is moving freely in my veins and arteries. Thank you for making this video. The more awareness to SMA the less people have to suffer. I am now 52 years old and I was not ready to die so I pushed and pushed doctors to do their jobs. Sometimes you have to find someone in a big city. My prayers go out to everyone suffering from this horrible illness. Please don’t be afraid of the surgery. It’s better than the alternative and you will get your life back. May God bless you all.🙏🏼

Uh you go on and on about sterility,but you touched the needle and had sterile gloves on and moved your shirt 👕... thats breaking sterility.... you can't go on with the process at that point because you are no longer sterile

Got diagnosed 5months ago after 7years of misdiagnosis, in and out of hospital. Im still not gaining weight and my dr doesn't want to operate because he's never done the operation before. I also have a rare blood type, which means this is a risky surgery for me. I'm seeing my dr tomorrow and I'm literally going to beg him just to do the operation, if it's a success, great if not, i rather just die on the operating table. But i can't take this pain anymore. I live in namibia, we don't have the best drs... So im terrified. Your video made me want to try harder tho, to fight this and be there to watch my son grow up. I almost gave up today. Thank you for the engorgement.

Did you have any issues with over heating and sweating?

How are you doing now? Do you still have the small bowel problem or did the doctors fix that?

You haven't made a video in so long. How are you doing today?

Hi I have gastroparesis, I’ve been losing more weight despite medication. I couldn’t drink water so I have saline infusions. I can’t eat I’ve lost a lot of weight. Getting tested for compression syndromes. The saline infusions I believe are keeping me alive. I deal with terrible constipation too and I have blockage as well . Hope your better

My daughter was just diagnosed. They then just sent us home. I don’t know where to turn. She can’t eat and is losing weight. She has an appointment with a GI but not until Dec. 13th. That’s a month and a half away. She doesn’t have that kind of time. Any suggestions?

<3

Dang girl, you been through it!! I checked out your channel after you had left me a comment and I'm so glad I did. You're one tough cookie! I had never even heard of anything like this, but I support your mission to raise awareness 💯. I subscribed and I'll be here to watch the videos. I wish you nothing but absolute health and happiness for all the years to come! 💜

These videos are so helpful and I will be doing infusions at home as well with my port.

I've been having SMA for like 5 months now and I'm on home TPN. I weigh 89 pounds now. I still vomit on tpn. it's really hard. I had to quit my job because of this too. I cant eat or drink. everything just comes back up and I have stomach pains. meds dont work. hopefully after my next two weeks are up my doctor will just go ahead with the surgery.

Sir, I was diagnosed Superior mesenteric Artery Syndrome I dont have feeding tube my weights normal 68 kg 5.5 height can. Though can eat whole food but Trouble digesting most of whole food. Had to restore the mesentery Artery fat cells between Aorta and small intestine pinch on renal veins. No cancer no diabetes no IBD No other issues CT pelvic angiogram normal no issues in pancreas but fatty liver may have on and off SiBo long term constipation stomach obstruction on and off. I never used nor trusted any elements diet orally will this helps me sir some manner to restore mesenteric artery fat cell. This is happened to me because of my rapid weight loss with rigorous gym cardio low calorie diet in past. still gained weight but still having problems symptoms like aces acnes pimples acid reflux, allergies , joint pain , bone pain stiffness it’s starts after eating food stomach rumbling gas stomach bloating and feeling full quickly less food . No vomiting problem. Please let me know any suggestions. I don’t want to do any invasive surgery or labroscopy. Will elementary diet game changer for me sir Thanks for your suggestions appreciated

You are amazing young woman...thanks for sharing ...my son was just diagnosed few days ago after 2 years of struggling everyday...he attempted suicide 2018 jumped from an overpass 28 feet onto highway...literally broke him all up...he's still has depression from all the pain & not eating from this horrific sma syndrome ....he is bones from all the weight loss...& it's a horrible struggle everyday watching your child say he don't won't to live this way...I've been researching all I can came across your video I'm all ears if anyone can tell me anything to help him...he can't keep water down at this time...I'm begging him to go back to hospital ER were we just had new Dr that was there for the weekend that found it and called another Dr at a bigger hospital that confirmed it...thank God for him or we still would still be in the dark ...& his depression is taken a toll...if anyone knows of anything I can do as a mother I'm begging for anyone that can advise me on anything...and the best Dr's & hospital to take him to....& again thank you sweet Vivian you are an angel for caring for others on trying to make people more aware...God Bless you & our prayers are with you 🙏 ❤

My daughter is 11. She has EDS, chiari, POTS, dysautonomia .... abdominal pain And vomiting her whole life. GI said nothing was wrong with her GI system. Just found out she has SMA syndrome with an angle of 4°. So frustrating we have to wait this long to get answers and people always said she is attention seeking, and maybe has anxiety. As a mom I knew that was not the case. She was wasting away and could barely stand some days... thanks for sharing. We are waiting for follow up to see what next steps are?

I was planning to join the NAVY but I started to have all this weird symptoms, I was diagnosed with this 2 weeks ago

Thank you so much for posting this!!! I've been to countless amounts of doctors who have misdiagnosed me. I was diagnosed with celiac as well, cut out gluten and got nowhere. I had lost about 30 pounds and was wasting away. Finally after 2 years I had found a bariatric doctor who diagnosed my superior mesenteric artery syndrome (SMAS) and have just gotten the laparoscopic surgical procedure and am now in recovery :)

Though, my mri scan tells nutcracker syndrome also mention on report says renal vein compression 3rd part of duodenum pinch small intestine but my gastroenterologist diagnosed me superior mesentery Artery syndrome But have no ishiemia no cieliac artery syndrome my gastroscope follow thorough fine .. can’t digest any food at all I am coffee addicted gradually moved to decaf one in day with milk sugar is going to affect my digestion causes malabsorption lose mesentery fat pad cell lose .. take digestive enzymes feeling slightly better but when I lie down my stomach started getting burning sensation travel through my chest area pimple achnes burning skin thigh legs whole body burns like image fire accidents on my stomach gagglesI was going through same situation with my doctors it deadly painful misdiagnosed fibromyalgia ms etc cannot digest even baby milk powder .. every time you eat pain all over my body aches pimples aches constipation undigested food on stool .. I don’t want to go through surgery like your it’s scary for me any suggestions most welcome .. is feeding tube supply directly into small intestine how food going to digest with bile salt enzymes this again cause malabsorption and develop strange Allergies..I also getting sudden breathing problem lose body balance on my left side radiating pain travel down to left leg from start back pain too. Any supplement easy for digest recommendations fast restore mesentery fat pad cells .. any predigested food helps me something.. ??? Thanks appreciated for your tips I am fighting want to over come without surgery ..

I feel for you Vivian , you going more painful progress then anyone .. you brave girl good heart to share this educate people .. god bless you .. you look beautiful anyway .. hope you heal and reverse this condition.. completely.. please do some study benefits of activating our pineal gland it’s supernatural power house .. stop drinking chlorinated tap water .. avoid tooth paste fluoride these simple mistakes could hinder our body healing hey .. by the way thanks lot for your reply .. I am keep fighting with my SMAS as well luck nothing else that that so far.. my doctor suspected compression vagus vein or nerve damage could cause mesentery fat pad losses in additional to my unhealthy Way weight loss in past ..and up course my stress too .. take care

AND the "TEGADERM" Touched the FUCKING Tegaderm with your dirty clothing....OMG.....if that's your hubby....hope he has a lot of insurance on you. You've already put GERMS in your IV Port Site.....when you touched the Tegaderm with your filthy clothes. I could go on....but I think you realize how dumb you are. Here's an ACTUAL CORRECT WAY TO ACCESS an IV PORT : th-cam.com/video/It2KIAd9J-8/w-d-xo.html *************************************** Also, I didn't "catch" the B.S. about the tube hanging out of your shirt due to "sweat" purposes??? LOL. Oh MY FUCKING GOD.....you can put it in your bra it doesn't cause that much "sweat". Well, it's a conversation starter if you leave it out of your shirt..."Oh, dear, why is that IV hanging out? Do you have cancer?" Give me a fucking break. I've had an IV Port for 10 yrs and I've never (and yes I'm old enough to have hot flashes now) "sweat" that much to have to have the fucking thing hanging out of my shirt so the END of the cap can get more INFECTION ON IT. WOW....I wonder if your doctor or the IV Center were you get your supplies from knows what bull-shit you're doing? It's clear you've got a big ATTENTION SEEKING ISSUE.....

Which you TOUCHED the SALINE "tip" to the UNSTERILE paper wrapping, not once but TWICE....so you've contaminated your NEEDLE by pushing the saline through the tip that touched the paper TWICE. Nice going. It's awesome how important referring to yourself as a fucking "spoonie" but you can't do a proper sterile procedure correctly. I'm an IV nurse and change IV Port Needles on a daily basis. If I did what you just did to a patient I would have INFECTED the patient of course. I'm not going to go further....simply because OTHER people have told you "The SPOONIE" how stupid and wrong you are. IF SOMEONE is watching this trying to LEARN to do their OWN IV Port care...STOP. DO not follow a TH-camr like this. Go to sites where NURSES have made videos on how to change your IV PORT.....PLEASE....THIS gal is going to get SEPSIS within months. Most likely, she's tickled to death to have a medical IV Port that she actually doesn't need for POTS. It's amazing how so many of you convince a doctor by not eating and fainting because you haven't had anything to eat that you have POTS when you obviously don't. WHY you would want to subject yourself to shit like this is beyond my imagination. There's several of these people on IG YT etc. TIK TOK, all bragging about being ill. WHY brag about it? WHY do your friends all have to KNOW about how ill you are? BTW....I've been ill for years and only a handful of people (family and 2-3 friends) know the extent of my medical issues. This isn't anything to brag about. You can KILL yourself doing the UNSTERILE TECHNIQUES as you are...... PLZ make sure your family knows how ridiculous you are....because they're going to be planning a funeral if you don't stop this. Go get some "SPOONS" to eat with.....you'll feel better. MORON.

Did you cured your SMAS by gaining weight please share your suggestions.. appreciated I am recently diagnosed superior mesentery Artery Syndrome

Thank you so much, this is a life saver potentially for me. Have the saline just needed a how to vid like this! This is going to make trialing IV saline so much easier and less expense. Thank you again. 💪👌👍😍

I have the same doctor

How are you feeling now

Thank you for sharing. I really needed this video now I’m getting checked out for MALS and am worried there is probably further involvement based on my symptoms but I’ll know soon.

After over 20yrs of doctors to doctors to doctors I finally found a interventional radiologist diagnosed me with MALS, on my way to the surgeon within the next few weeks. I've been given memory pills, depression meds which I refused to take, and sent to the psychiatrist, I said, however, I can't make my lab work abnormal. Thanks God for determination! I clearly understand your struggle. Thanks for sharing.

Hey! Sorry, I just found your channel, but are you doing okay? I hope you are! I’ll keep you in my prayers! 🙏🏼

I am very happy to know that you are doing it well... my wife is also having it after having the gastric bypass because she is unable to keep weight consistent...best of luck...

Thank you for this. Love from a fellow potsy ❤️

Does cect abdomen detects this disease

Does the nurse need to wear sterile gloves when feeling the port for where to do the poke?

The sound is terrible!

I just found out I have it, I have the decision of surgery or feeding tube and idk what to do

Hi Vivian, I'm currently in the process of being diagnosed, I've literally had every test known to man done CT's MRI PET barium bowel series colonoscopy endoscopy you name it... I currently weigh 97lbs from 160 less than a year ago... I've been so alone in all this and I honestly can not say I'm glad to have someone who understands the hell that this is... I'm seeing 5 gastro Drs ATM a general surgeon and a vascular hoping this angiogram will she'd some light... who is the Dr you saw in Miami? I live in Vero Beach Florida... I know it's a drive however, I've been all the way to Gainesville with this...are you doing better now and are you managing well without surgery? Thank you for posting this,been so lost and beyond ready to give up but I do have children that I want to know but life is worth living and giving up isn't an option.

Hi Vivian! I have just recently been diagnosed with SMA and am at a loss. I just also had my 3rd baby recently who is now 5 months old. I have gone back and forth to doctors who have said I had IBS, it was anxiety, ulcers been through numerous tests and now just finally found some relief in hearing a diagnoses. I have since started research the condition and feel like I am even more at a loss and my fear is very much taking over. I live in a small community in northern BC and the doctors here have never heard of it and I have since been referred to a vascular specialist.. thank you for sharing your video because it has brought me awareness to how this condition is. Do you havr any information to share I am all ears because I haven't been able to speak to a professional with any knowledge behind this yet

Thank you for posting!! You are saving lives! Who is the doctor in Florida that dx you with SMA and got you on TPN?

Is it posible to have tremors or seizures with pots?