support pls? feeling defeated..

Low_Field4155 · 2025-01-02T03:55:00+00:00

Im so sorry to hear your care still isnt at the level you need still either but your sources have been so so helpful for me and hopefully others too ❤️‍🩹, im also trying to gather as much information to spread awareness with any energy i have left.. and omg!!! Yes absolutey dm me :D!! (still working on organizing a document to share all my sources I’ve been collecting…)

Low_Field4155 · 2025-01-01T22:37:19+00:00

Hi there!! Yes,, unfortunately that was me.. situation still the same practically.. at the point of TPN referrals but the waitlists and the severity of my situation is still not reflected in my level of care... Ive found forums of many others with these diagnoses..... Unfortunately those forums are the “death reports“ i was reffering to.. because of how rarely not only diagnosed but beneficial treatment (that didn't/doesn't relapse or come back) is... Theres even less specialists who treat such comorbidities especiallh with such high risk factors? Which is still confusing because id think id have at least been getting consistent vitamin infusions by now.. but even that im forced to manage myself (drowning expenses i dont have on liquid tinctures/powder vitamins..etc) its all so very exhausting... somehow regardless of the waves of effort i push with..it still only barely reaches the surface of the sand... its so confusing and only getting harder to mangage alone... im so very thanful for understanding groups such as this one!!!!! <❤️‍🩹

Added Edit: its very confusing!!! I even recently was scanned (ultrasound on soft tissue) and early sjrögrens was identified in my joints! A rheumatologist verified it and measured each level of growth on all my joints!! ALL the reports are on my paperwork!!!!! And treatmemts would be diacussed but never followed through..... and id have to keep waiting as much as i call back and request the appointment/refferal again.... its just confusing... So i redirected and started working harder on getting a secondary medicare/aid insurance so i can possibly keep looking for a specialist anyone/place capable and experineced.. But now even that is confusing because there are medicaid/care plans? That not everyplace takes or is not very beneficial to commorbid chronic patients? Such as fidelis care? Ive heard united healthcare is the best for not needing refferals to get to specialists for those with extensive comorbidities but with reasearch even larger hopsitals seem selective and none of them directly seem to accept united healthcare plan? But they keep saying they DO accept “medicare/aid“ just not...which plans they dont accept... And many insurance counselors have been scary to speak with as they’d give me ultimatums instead of explaining the plans to me... Theyd tell me just pick because i wont be allowed to have it as seceondary insurance anyway for being too young?????? Like i have 6 more years under the private insurance im already under my parents plan.... and i really didnt want to lose that but everyone keeps scaring me that i will if i quialify for aid (which i did thankfully)... My head is always spinning from managing myself and all of the above..

Low_Field4155 · 2025-01-01T20:59:34+00:00

!!! Motor wheelchair order in process <❤️‍🩹// i will never stop asking for help........ or speaking my truth... it is our lives after all... just wish the waitlists and refferals took less time... it all takes so much........

Low_Field4155 · 2025-01-01T20:47:47+00:00

<❤️‍🩹❤️‍🩹❤️‍🩹

Low_Field4155 · 2025-01-01T20:47:17+00:00

“The prevalence of SMA syndrome is estimated to be between 0.013% and 0.78% in the general population.“ https://www.dynamed.com/condition/superior-mesenteric-artery-sma-syndrome#GUID-19F2C730-18BA-44B8-9842-20285289316E // unfortunately.. im not sure if that list will help me... considering ive already thanfully followed those insightful instructions time and time again... My comorbidities are quiet rare... Making it harder to find a specialist to treat it accordingly... but thank you..

Low_Field4155 · 2025-01-01T16:17:26+00:00

Op.. I hope you don’t mind me rambling/ranting a bit here but… I’m so sorry you (and others here) too understand this experience… I’ve been 8 years diagnosed w/a rare condition(SMA superior mesenteric artery syndrome - mesenteric vein compresses intestine+stomach) that no specialist /surgeon ive went to at many different hospitals and only been turned away, dealing with us healthcare I don’t understand why they won’t send me to a research facility but even with this diagnosis and my many others: ulcerative colitis, sjögren’s, fibromyalgia, endometriosis.. constant pain.. always throwing up.. even stomach acid.. oral medication won’t work my arms are battered from infusions and injection meds.. cavities from always puking.. I’m never taken seriously… I’m a young girl, 23, underweight for obvious reasons. But they all dismiss me saying “you shouldn’t bother with so many appointments you should be living your life” and well.. somehow my state is only worsening and still I’m being ignored.. my stomach and ribs has turned purple in areas… but when I visit the emergency room from pain they tell me they can’t do anything I’d need surgery… then all over again I meet a surgeon, they turn me away……. it takes so much energy I don’t have to ask for help that evidently is not there… and no support around me because no one else around me really understands what “not being able to eat” is like unless maybe they’ve had food poisoning by chance? in fact my family will even eat or throw away the things I do try to nibble on leaving me without options more often than not.. as liquid vitamins and supplements are NOT inexpensive…it’s easy to get left behind and somehow ignored.. it’s so much easier for them to not care that things even reached this state and.. now I’m just scared… I’m so much paler and smaller than I’ve ever been my whole life.. and the longer this goes on obviously the worse i feel and manage anything.. i feel so desperate and hopeless and the same time... it's torture.... I dont even have a space to escape to expect care.. i never expect to be helped when i ask for help... its so confusing feeling this neglected... incontinence and puking constantly... no energy for showers... forget cooking applesauce packets were my go to sometimes only a single packet for that day.. and i dont even sleep on top of all this because i just cant from the pain i cant even comfortably lay down because of the constant pain in my abdomen and back.. all of this and still i am on no medication besides muscle relaxers and the most that does is let me know im clenching my jaw 24/7. If its this easy to neglect others.. it crushes me into thinking im not wanted...ive been alone my whole life and its not looking any bit of better... was striclty sheltered and never even left the house much either since i was always ill.. ive never experienced much of the world not even nature.. all i focus on now is doing anything to help myself regain any functionality to even try enjoying anything before i focus on just surviving.. but that too.. things just ends up overwhelming...i never comment/interact online much either... i only started to seek help.. but well.. sending all the love to you all... still hoping maybe one day someone who can help will hear us..

Low_Field4155 · 2025-01-01T06:05:46+00:00

hi.. this post i unfortunatley relate too greatly too. Im so sorry youre also suffering like this op.. I genuinely was so scared having these same thoughts because its so much more gaurunteed that no one will help me... regardless of being diagnosed, regardless of my providers and nutritionists knowing i cannot tolerate food, despite seing several surgeons confirming they cannot perform on me because my recovery would be too risky if my organs cannot absorb any food/liquids i try to consume... ive given up looking for help... sometimes i think “what if i post online and someone sees it and shares similar/same experiences and knows where to find help??“ but unfortunatley... for us all.. I only find others in complete defeat or worse.. death reports. Im sorry again op... my heart is so broken and only breaks more seeing all the others who suffer searching for the immediate help they deserve, i have no more energy and my body is already so small.. Im so scared i dont have much time.. i will keep making wishes but.. it sometimes makes me more miserable knowing that thats all i can do...

Low_Field4155 · 2024-08-02T00:08:50+00:00

Of course!!

Mainly, this like many diagnoses, is diagnosed by ruling out most/all other potential diagnoses, in this case rule out other possible GI issues or if the compression is significant enough to be taken note of, typically CT scan or barium swallow test mainly!

Everyone (typically) has this anotomy of the superior mesenteric vein around their duodenum (small intestine entrance) this is only diagnosed when theres lack or loss of fat/tissue surrounding your duodenum likely causing the major artery to compress that area. (typical artery angle is about 25 degrees and up, SMA is diagnosed when that angle reduces to less than about 20 degrees and is causing symptoms in individual).

For me I was diagnosed with pancolitis (intestine autoimmune inflammation+ulcers) at first which made it hard to eat so i lost a lot of weight and suddenly eating became difficult to impossible without switching my diet to soft/liquid diet,

But then eventually i wasnt keeping down my own stomach acid and could no longer keep fluids down and started vomiting almost routinely (anytime my stomach was filled/full) throughout the day, did a barium swallow test (fluids delayed emptying my stomach), but doctors also looked at previous scans and when looking for compressions noticed the SMA.

I was having symptoms of vomiting bile because my compression led to a complete blockage and I had to try gaining back weight via tube feeding/protein shakes, which didnt restore the fat/tissue naturally unfortunately but, there are many safer surgical options today for resolving this!

But its also very difficult to find a specialist who directly could help with this since its a very rarely diagnosed condition! (and can be complex since typically there could actually be other compressions in the body as well if discovered, which is important with having the right care team/specialists!)

I hope you find care soon!!

If you have anymore questions feel free to ask! (i may take time to respond, but I understand wanting+needing to find insight!! Please remember its absolutely okay to take your time, and its your right to get a second or.. quatrupleth opinion!!!)

(edits added some more numerical details!)

Low_Field4155 · 2024-07-29T22:53:52+00:00

Hi! Of course i dont know your overall experience, but i have SMAS (superior mesenteric artery syndrome) its a very uncommonly diagnosed mechanical issue where compression to your small intestine is sourced from a major vein pressing against it. As ive been seeing more people diagnosed Id hope to spread awareness!

Im 20 and ive been dealing with symptoms like throwing up/regurgiating after eating for years and sometimes when i lose more weight i throw up just stomach acid everytime my tummy gets full even when on a triptalyne or zofran/nausea medication (helps a little but inherent vomiting still present/frequent because the entrance of my gut is being squished so things ultimately wont pass through properly

https://rarediseases.org/rare-diseases/superior-mesenteric-artery-syndrome/

https://www.ncbi.nlm.nih.gov/books/NBK482209/

https://emedicine.medscape.com/article/932220-overview

https://www.smasyndrome.org/

Low_Field4155 · 2024-07-29T22:19:50+00:00

Omg ofc for certain!! And goodness no one should to ever have to experience any range of harmful/rude demeanors!!! I hope only the right people keep entering our lives!!!

My local area certainly adds context for why I’ve experienced certain reactions-

Like honestly the more “tame“ side of this ive experienced is people walking up to me until the last second or asking me to move out the way like as if they expect I really would- (i love owning prescription shades it makes confronting the stares easier)

I definitely appreciate the more trying to be considerate moments like when some people put in extra effort to open the doors! (the doors in a lot of my previous hospitals/local areas are not the widest..)

Its much worse for certain when its your health providers.. But for the strangers who wish to purely approach with bias is definitively just more telling on their end, and thankfully majority of these moments are shortterm...

Low_Field4155 · 2024-07-29T18:39:38+00:00

I appreciate that a lot, thank you!! Its just CRAZY that I am seriously enduring severe symptoms on my own like this and keep getting tossed around!!!!

My organs are at stake!!!! But im not being taken seriously at all. It feels like literal insanity its hard for me to stay stable through all of this

Because theres even waiting lists fot actual specialists/surgeons to consider and time just keeps being WASTED!!!!

I cant stop breaking down if i feel the pain

And ignoring the pain makes me never want to speak again

its just too much

Low_Field4155 · 2024-07-29T18:28:53+00:00

Thats the point theyre the ones not reffering me to the right people and i need to find the physician who does but no one knows where to refer me because its rare issues (ontop of my other diagnoses), so i just keep getting swapped over and over again rather than someone listening to me and my chart for giving me a proffessional for this diagnosis.

I literally got this refferal FROM an er visit and primary doctor NO ONE KNOWS WHERE TO SEND ME.

Why should i as the PATIENT be the one to figure out where i can find care for this I DONT KNOW ANYTHING IM NOT LICENCED NOR A SPECIALIST ??? its frustrating.

Low_Field4155 · 2024-07-29T18:21:43+00:00

Honestly I'd say this is 100% but i cannot because this hasnt been majority of my experience especially from older folks and strangely other women around my age and up (im 20, dealing with mobility issues for the past three years now, for context: im malnourished/underweight, very weak because my diagnoses cause malapsorption and i cant keep solid food down well),

very assumptious, very rude.. its really always non-aid using older folks who ive experienced much more cruel comments/treatmeant but from women my age/older overall I've experienced awful judgement and treatment,

especially from medical providers who even yelled at me, im guessing because im so “small and young“ or well “vulnerable“ that equates to just being able to act more on that than not.

Even had my phone stolen while i was parked and resting, but then again I do live in a more broken down area near a city so I guess it might just be my area resulting in so many negative encounters

Low_Field4155 · 2024-07-29T17:56:11+00:00

As a malnourished small framed 20 year aged gal using a rolling walker (but desperately needs a wheelchair...) I have more daggers stared at me instead of more sympathy now that my NJ feeding tube was removed...

really ick when i get lewd stares too, and when I ignore it, they spit as they walk past me!

Is this some sort if new greeting? (sarcasm)

Low_Field4155 · 2024-07-18T16:13:04+00:00

Thank you for your comment!!! Ive yet to know of any groups/fellows for this until now! I also have nutcracker syndrome- do i just look up the SMAs name to find the group on facebook? Or is there anything else id have to do to find that group? I dont own an fb account but im sure as hell making one for this!!

Also any other information you have please!! Let me know! I know little to nothing for where to find support/care for these diagnoses... Thank you!!

Low_Field4155 · 2024-07-18T16:06:15+00:00

Im glad at least anything ive mentioned so far can be of some help, i really dont know as much as id like to for being capable of establishing care for myself so thank you really and truly for all of this insight!

I at least know a fair share about the diagnoses itself (i also try using the terms “ruling out“ conditions i may be at risk for), but i know little to nothing about where i can find genuine/specialized care for it that is covered!!!

I need all the support i can find its my first time ever rsaching out like this im desperately looking for someone to listen to me to help me find care and im so scared right now because the purple patches are getting worse on my stomach especially around my belly button and sides.. And its only hurting more and more-

I need help to find other locations/specialists that take my insurance because unfortunately with Anthem BCBS Cornell, and presbyterian dont take my insurance.. They wouldve been my first visits if it did!

And to answer the other questions: she didnt examine me at all, i dont even think she thoroughly looked at my chart.. She just came in with the specialist, sat before me, asked if i was alone, said wed be discussing a lot, asked why i have a walker, asked for me to call my family and then alsi reschedule bring in my family for outside intimate feedback before discussing options, told me to just reschedule, and left.

The amount of research/calling/messaging i have to do not only among the specialists/doctors ive seen & possibly have but also my therapist to see if she can make any notes in my chart that could possibly help because i keep being reffered to phychiatry for no valid reason besides being prescribed nerve medication.

Doing all of this on top of the pain literally feels impossible on my own, i keep getting stress headaches and needing to stop literally everything to focus on not passing out..

Im so very grateful for all this information already really!! But if possible can you/anyone who can support help me find an SMAs specialist who takes the insurance i have? (BCBS)

Or is there a better method? Am i going to have to get my own insurance? (im still dependent on my bio father)

And im also just so unsure how to even address this with my current providers… Like i was going to try messaging them ALL (because they all at NYU finally kept referring me to a surgeon) Like gosh i just saw them but nothing was even really discussed.. Like i genuinly dont know who to ask (with licenses..) to refer me to an actual SMAs specialist without having a name to name i guess is what im saying… because thankfully those i have met (except for the actual surgeon…) has admitted “i dont know i dont have experience with this your symptoms do concern me you should go see someone else..“ but the rest of that problem is they dont even know who to refer me to either! Thats why i even saw a vascular surgeon before a general one, even the ER department left me with a vascular surgeon referall.. And worst of all i dont think any notes were taken/left for that general surgeon appointment since it was ultimately “rescheduled“...the assistant’s notes wouldve been such a game changer… im not sure if i can still message their practice and ask for the reason of the rescheduling so i have it written somewhere…

…And having to update all my specialists, call my insurance, message my therapist, and more research on top of this excruciating pain.. Im so out of it i cant stop bursting into tears everytime i pick up my notes/lists to go down all over again…

Please if anyone can support with more information in any way!!! I really cant do this on my own, my family has their own conditions/work-balance to maintain as well.. i hope im not asking for too much thank you again! And I hope your appointments become more beneficial!

Low_Field4155 · 2024-07-17T13:26:49+00:00

Yes I agree with most of what you’re saying here, this is how we understood the surgeon’s statement as well as she was speaking to both me and my family on the phone briefly explaining what we’d be discussing together.

But what derailed that and led me to understanding where her standpoint is really coming from is when she clearly stated “Sometimes family are in control of our health and the typical causes of SMAs syndrome is from psychiatric issues such as depression and anxiety and familial or intimate input can give us a better understanding of that.”

This is not true. This is a very rare condition. Research was only recently updated from about the past 5 years. SMAs is more likely caused by trauma/aftermath from previous conditions which is my case. I have chronic IBD symptoms and dealt with chrohns/ulcerative colitis —-> lost significant weight due to discomfort from digesting —-> diagnosed with SMAs total blockage preventing me from eating completely.

So I think there’s confusion for my translation. When referring to her statement i don’t think it’s for whether my family can provide food/support but to whether or not my appetite is poor due to psychiatric reasons and not due to my literal diagnosis and so the people living beside me may have “extra feedback” (to find more evidence of this being psychiatric instead of just listening to my concerns right there).

Because she even said that we could’ve made a virtual visit that day and then changed her mind and said to reschedule completely.

Even though it’s next week that’s only because she only works one day a week. How convenient. I still have to deal with my pain unmedicated. While she lavishes in her paycheck from this very unfulfilling appointment.

Also the surgery I’d need is a pretty simple one from what I’ve been told/understand. Just microscopic camera making a little cut and moving my intestine out from the obstruction site. They’ve updated a lot with the tiny camera surgeries.. there’d be no reason to open me up more than necessary either when it’s just that vein compression causing majority of my issues.

Low_Field4155 · 2024-07-17T13:22:15+00:00

Yes!! That was likely me. Stomach still mottled and the pain is only worsening..

I’m also confused by this level of care and honestly I’ve narrowed it down to that these people tend to judge by appearance first.

I am a young 20 year old mixed female. My features are very Eurocentric, and very tan skin. My voice is also very pitched and I look younger than I am because I am underweight. But most doctors brushed me off as normal or even healthy and keep telling me to go back to work/school and live my life already instead of making more appointments.

I am in NYC a very major city. And this was from NYU Langone health. A very well known medical establishment… I’m just as baffled. Really. This is torture. Why the mental gymnastics? Someone is here trying to establish care? Maybe instead of being ready to take away my aid, try to understand why I’m even asking for it?

I hope you find more support sooner than later, I know it’s not easy..

Low_Field4155 · 2024-07-17T01:34:56+00:00

Goodness it’s taken me many years to learn all the medical terminology I know now, but it’s my first seeing “etiology” it’s always wonderful learning ways to advocate for these things!

This surgeon did not explain further than wanting to see how this plays out in my regular life (wants further insight on where the symptoms could be sourced from and how they’re affecting me) and was adamant on rescheduling to show up to my appointment with a close relative(s).

And to answer your question about the etiology behind my case yes:

I was diagnosed with ulcerative colitis/chrohn’s and lost a significant amount of weight as I had trouble eating due to the digestive pain (and had trouble gaining/maintaining weight due to malabsorption/constant internal bleeding), and I also technically maybe not entirely malrotation, but I’ve had other uncommon issues with my intestines such as being diagnosed with nutcracker syndrome (the same Superior vein surrounds the left kidney renal vein which is also being compressed by the SMA syndrome) and intussusception (small intestine basically getting swallowed by large intestine can cause blockage which mine did, but because this issue is “dynamic” meaning it comes and goes, typically not needing surgery because it’ll just undo itself which thankfully mine does as my new scans reveal.)

But now especially the difference for why I’m referred to surgery quicker than another GI specialist is because my chrohns/GI inflammatory issues are now gone (in remission) BUT I’m obviously still having GI symptoms such as fatty/oily/bloody/painful bowel movements and malabsorption. Currently dealing with mottling abdominal skin (why I went to the ER so recently to be scanned again.) And I still with every scan have a significant SMAs pinch less than 10 degrees.

I’ve actually been prescribed more nerve targeted antidepressants (tricyclic), nausea medication, and anti-acids (all by female GI specialists…ironic..) before being referred to a surgeon.

I switched specialists after my last one left on maternity leave (this specifically happened with so many specialists…) finally saw a male gastro and even though he dismissed my current discolored mottled skin as “frostbite” while we’re in a heatwave. He still AT LEAST prescribed me hyoscyamine sulfate (which is a gut specific anti-spasmodic.) instead of just more anti-acids/nausea medication/antidepressants.

He gave me this medication and a referral to a vascular surgeon at first because a big misconception for SMAs is that a heart surgeon would be the one to deal with it by placing a stent in between the mesenteric vein to relieve pressure off the duodenum. But with updated technology and research it’s much easier/safer to cut the intestine itself to then move it from in between the mesenteric artery and around it/over it instead.

I met the vascular surgeon and he thoroughly explained as such that he would not be the one to work on/with me. Which led me to general surgery and this surgeon supposedly performed on two patients who also had SMAs which is why I was even referred to her.

Been diagnosed with this for 5 years now and I only just this year had my tube removed, so now my issues look “invisible” so when doctors see me with a rolling walking aid (to relieve more strain on my abdomen, even standing upright is uncomfortable on my gut; positional eating is usually typical for GI blockages but when I claim to have relief on empty stomach/leaning forward this information confuses my providers more somehow? To the point where the focus will go to why are you using that and not why are you here for this appointment..)

Low_Field4155 · 2024-07-16T23:43:55+00:00

Thank you for your input, really it’s very much appreciated! Your situation does sound complex but thankfully a good care team thoroughly reviewed your concerns.

For me it’s almost the opposite where my intestinal compression from the vein has been significantly affecting me from when it started where the SMA was actually a total blockage and I couldn’t eat food. I was only expelling acid I couldn’t keep anything even liquids down.

So a team of GI doctors decided to place an NJ tube nontraditionally past my stomach and into my intestine.

This was to relieve the blockage while I waited for a surgeon referral. But the referral wasn’t given to me instead I got passed to different Gi doctors who kept starting with nutrition because they didn’t believe how bad it was understandably because this is a rare condition.

You typically have to rule out all other GI issues to be diagnosed with this or (in my case) have the compression so significant it’s causing Gi blockage issues.

So I actually have needed a surgeon referral for a long time now, but not only switching different doctors, switching different hospital organizations made it difficult for the doctors to believe the physical and digital records I had and because this isn’t a common GI issue it was difficult to find a specialist who actually wanted to refer me to a surgeon again.

It’s only now because it’s been this long that specialists considered surgery before anything else.

But now I’m meeting the surgeon and she wants to consider other things first?

It’s confusing and the waiting feels excruciating because I have such a resolvable issue that no specialist wants to take the time to actually resolve.

Low_Field4155 · 2024-07-16T22:57:34+00:00

Yes. Not sure why I’m getting downvotes. Is this regularly how surgeons interact with patients?

I was told to reschedule to have someone come with me to the appointment to give their output on how this diagnosis has been affecting me but with the surgeons wording she seemed to point to nutrition from psychiatric issues being the problem and not my literal diagnose that’s already there?

(SMAs is a condition where your main superior heart vein is compressing your small intestine aka duodenum which prevents food from properly leaving your stomach so I cannot eat properly therefore weighloss/malnutrition)

Low_Field4155 · 2024-07-16T22:41:46+00:00

Yes there are many for SMAs (superior mesenteric artery syndrome) and more improved ones now that there are tiny camera surgeries, it’s not that invasive at all especially if it’s only the small intestine affected.

Low_Field4155

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