Anonymous #2 4w

I've already had surgery for MALS and SMAS

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Anonymous #1 3w

i have pots and severe stomach pain from the MTS. i’m being seen by dr spencer at MIPS in colorado. they specialize in treating vein compression disorders

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Anonymous #2 3w

sorry yes i should’ve clarified. the dr who diagnosed me only specializes in vein compression disorders. she saw the SMAS, but she said a special gi dr will need to fix it. but they want me to wait and see if the stent for the MTS will help my gi symptoms. if not, then pursue the gi surgeon. how was your surgery?

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Anonymous #2 3w

and what kind of dr do you see for that? they weren’t totally for sure

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Anonymous OP 3w

Im going to tell you something very important, you cannot just go to any doctor for these kinds of conditions. Your everyday GI specialist likely is not educated on SMAS. I was turned away from 15+ doctors and 3 hospitals until I actually went to someone who specialized in SMAS

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Anonymous OP 3w

and definitely do your research on the different types of SMAS procedures. there are different procedures that different surgeons do and you need to know which one is best for you before deciding to get surgery

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Anonymous OP 3w

I have pots too. Did they believe stenting would help with pots?

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Anonymous #1 3w

Yes, its common for POTS to be secondary to another condition and they believe its either the NCS or MTS

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Anonymous #2 3w

My cardiologist seemed to think it would not help my pots to get the procedure. Is that not true? Have you seen improvement with your symptoms (if you’ve gotten stenting done)

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Anonymous #1 3w

it really depends if your POTS is primary or secondary to another condition and you cant really tell unless you fix the other issues first. i haven't been stented yet but in december i should be

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Anonymous #2 3w

i’ve been looking into the laparoscopic type of SMAS surgery. can i ask, who did you see? i’m so lost on all of this and feel kinda blindsided. i suspected the MTS for sure but didn’t have SMAS on my radar. explains a LOT tho. i’ve had such unexplained GI issues. my GI dr swore i had crohn’s, but all testing came back negative. he’s referred me to mayo, but i haven’t made an appt yet.

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Anonymous #1 3w

i’ve heard sooo many stories of people’s pots going into remission from it. praying mine does! if not, at least it should help my severe pelvic pain.

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Anonymous #3 3w

can i dm you? i had MALS and SMAS surgery, currently deciding if i want to do MTS or NCS next

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Anonymous #2 3w

yes of course!!

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Anonymous OP 3w

What type of pelvic pain are you experiencing?

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Anonymous #1 3w

sometimes feels like i’m giving birth. happens when i wear too tight of pants, sit too long, or eat something bad. it’s like all of the blood in my body drains to my pelvis and cramps super intensely and gives me presyncope (i have pots). sometimes it feels like my organs are going to fall out and contractions. hurts in my pelvis and tops of my thighs. i’ve had a whole gyn workup and all normal.

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Anonymous #3 3w

how are you doing now?

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Anonymous OP 3w

so much better. i can eat again (no more feeding tube!!) and most of my NCS symptoms are completely resolved. my MTS has started causing more issues, so im working on getting that handled. but im able to be back at school again and actually have real quality of life again

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Anonymous #3 3w

im so happy you're doing better! i'm no longer on a feeding tube or TPN! i'm back after school again too :)

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Anonymous #2 3w

yipppeee! i’m so glad you’re doing well too 🥹 my surgeon saved my life. i owe everything to him

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Anonymous #3 3w

omg that’s amazing and gives me hope!! what kind of surgery did you have done?

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Anonymous #2 3w

that’s so awesome!!

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Anonymous OP 3w

i had a duodenal derotation with anastomosis by dr ivan zendejas. that surgery or the alvear procedure are most successful because they actually remove the small intestine from the compression instead of just making a new opening. with the procedures like the DJ or DDJ, there’s no guarantee food actually passes through the new opening, so symptoms can remain if food goes through the original path and still gets stuck behind the compression.

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Anonymous #3 3w

i had the alvear procedure too! im considering dr zendejas for my autotransplant

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Anonymous #2 3w

he did my autotransplant! he did both of my surgeries at the same time. he’s fantastic i 1000% recommend him. his office kinda sucks with communication so you kinda have to bug them a lot to get things done, but him and his PA Kate are fantastic as are the hospitals he does the surgery at

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Anonymous #3 3w

i feel like most doctors in the vascular compression area suck at communicating😅thank you for sharing your experience!

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Anonymous #2 3w

haha he’s great at communication! his office is just bad at returning calls/emails or getting orders sent over.

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Anonymous #3 3w

thank you!!

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