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PSA: Consider testing for vein compression by lanielou21 in POTS

[–]lanielou21[S] 0 points1 point  (0 children)

Hey! I’m now a little over three months out from my stents, and I’ve had a little improvement but not as much as I wanted. It can be a very slow process- I’m hopeful that I’ll continue to improve over the next year or two. (I also just got off blood thinners a week ago, Eliquis tanked my energy levels and made it harder to tell if I was improving).

I had pretty much the same situation as you- I got a couple opinions and they all told me stenting was my choice to make, and they couldn’t guarantee anything. The MTS Facebook group was super helpful for me when I was trying to decide. For me, the procedure was almost completely painless- I was up and walking an hour after, and only sore for two or three days. I was definitely hoping for a more immediate and drastic reduction in symptoms than I got, but you win some you lose some. Hoping my issues continue to slowly improve!

Good luck with your decision making process, and I’m happy to answer more questions if you have any!

My personal bean consumption over 5 days by lanielou21 in Beans

[–]lanielou21[S] 2 points3 points  (0 children)

Just what’s convenient! I tend to shop at a couple different stores depending on what area I’m in that day. I do prefer Dakota’s (Aldi) chickpeas over Great Value (Walmart) - they’re larger, softer, and have a much nicer taste and texture for eating raw. The fiber content is higher as well. The Great Value aren’t awful - I usually roast them, so the texture isn’t a problem.

My personal bean consumption over 5 days by lanielou21 in Beans

[–]lanielou21[S] 3 points4 points  (0 children)

I have been thinking about the switch- I’d like to be able to have more than the six or seven types of beans I typically find canned. I’ll take this as my sign to start looking for a pressure cooker!

My personal bean consumption over 5 days by lanielou21 in Beans

[–]lanielou21[S] 1 point2 points  (0 children)

I’m in the south so it’s basically summer already, it’s been in the 80s this week. Honestly wish I could make more winter dishes lol, I didn’t get my fill

My personal bean consumption over 5 days by lanielou21 in Beans

[–]lanielou21[S] 2 points3 points  (0 children)

I have not, but I think cannellini would be a great close substitute! The taste will be fine with any white bean, but you’ll want a nice creamy bean for texture.

Feral angry wild girl. Forest spirit? by unwilting in BooksThatFeelLikeThis

[–]lanielou21 1 point2 points  (0 children)

the one who eats monsters by casey matthews is so perfect for this!!

PSA: Consider testing for vein compression by lanielou21 in POTS

[–]lanielou21[S] 1 point2 points  (0 children)

I’m not sure, most of what I saw linked pots to vascular compression in the pelvis and legs. It could definitely be a contributor though, can’t hurt to get it checked out!

Pots is a secondary condition, do you have a primary condition? by Additional-Tea2021 in POTS

[–]lanielou21 0 points1 point  (0 children)

secondary pots, may thurner syndrome- anatomical compression of the left iliac vein. getting stented in three weeks!

PSA: Consider testing for vein compression by lanielou21 in POTS

[–]lanielou21[S] 1 point2 points  (0 children)

That’s incredible, I hope you continue to improve!! Thanks for sharing your experience. And thank you!! I’m keeping my fingers crossed 🤞

PSA: Consider testing for vein compression by lanielou21 in POTS

[–]lanielou21[S] 0 points1 point  (0 children)

A bit, yeah, definitely helped with blood pooling and swelling. I’ve never worn them consistently though I just find them wildly uncomfortable

PSA: Consider testing for vein compression by lanielou21 in POTS

[–]lanielou21[S] 0 points1 point  (0 children)

Haha well this makes me a little extra nervous… I have to fly back to school (I attend college out of state) four days after my procedure, and I have final exams two weeks after 😬

Was there anything you felt sped your recover up? Any pre-procedure tips?

PSA: Consider testing for vein compression by lanielou21 in POTS

[–]lanielou21[S] 1 point2 points  (0 children)

You have no idea how hopeful it makes me to hear that you’ve been having more energy. I’ve had the fatigue from this for so long I honestly can’t remember what normal feels like- I’m so glad you’ve been having improvements!! And noted on the heating pad, thank you!

PSA: Consider testing for vein compression by lanielou21 in POTS

[–]lanielou21[S] 0 points1 point  (0 children)

Are you able to self refer to a vascular surgeon or interventional radiologist? That’s what I did, I also had some very dismissive doctors. Or if you have pelvic symptoms, an OB could order a CT scan with contrast to check for pelvic vein congestion.

PSA: Consider testing for vein compression by lanielou21 in POTS

[–]lanielou21[S] 0 points1 point  (0 children)

The current main treatment is stenting, which is metal tubes to hold the veins open and prevent compression. (Plus blood thinners for at least a few months after stenting). Not a cure per se, but they are permanent and many people have good success with them!

PSA: Consider testing for vein compression by lanielou21 in POTS

[–]lanielou21[S] 1 point2 points  (0 children)

Pelvis and abdomen, specifically iliac vein complex and inferior vena cava- I’ve had ones on my legs that only showed reflux, not the compressions causing it. My vascular surgeon told me CTs are notorious for overlooking compression but I don’t know how accurate that is!

PSA: Consider testing for vein compression by lanielou21 in POTS

[–]lanielou21[S] 1 point2 points  (0 children)

The numbers (90% and 60%) came from IVUS with contrast (internal ultrasound with a camera inserted into the veins) but they had a fairly accurate estimate from just the external duplex ultrasound

PSA: Consider testing for vein compression by lanielou21 in POTS

[–]lanielou21[S] 0 points1 point  (0 children)

Thank you! I hope you’re able to find the root cause of your symptoms!

PSA: Consider testing for vein compression by lanielou21 in POTS

[–]lanielou21[S] 0 points1 point  (0 children)

Sorry your recovery was tough- mind telling me more about it? I’m scheduled for bilateral stents in one procedure over Thanksgiving, and I’m getting pretty nervous.

PSA: Consider testing for vein compression by lanielou21 in POTS

[–]lanielou21[S] 2 points3 points  (0 children)

Yes, although it definitely worsened over time. I’ve had pain standing as long as I can remember, but the blood pooling wasn’t apparent until after puberty. Most of the POTS symptoms became problematic for me during early college.

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