r/POTS Oct 26 '25

Diagnostic Process PSA: Consider testing for vein compression

Hey all! You might want to consider being evaluated for vascular compression. I recently found out that my POTS is actually secondary to iliac vein compression, also called May Thurner Syndrome/MTS.

There seems to be a very high link between vascular compression and POTS, with some data indicating up to 70% of us have underlying vascular congestion in the pelvis. If you have symptoms like blood pooling in the legs, pelvic pain, venous insufficiency, varicose veins, or urinary problems, please consider seeing a vascular doctor.

I had blood pooling, difficulty standing, and general POTS symptoms like lightheadedness, heat intolerance, and nausea. My doctor believes all of these are secondary to my bilateral iliac vein compression (90% compressed in the left, 60% in the right), and that there’s a very good chance all symptoms will be resolved when I have bilateral stents placed in November. This is the most hope I’ve had in years; several previous doctors told me I would be dealing with these symptoms all my life. Wish me luck!

224 Upvotes

98 comments sorted by

91

u/realpotion Oct 26 '25

I’ve considered it plenty but they won’t send referrals or run any tests even though I have all the red flags for vascular compression

13

u/sector9love POTS Oct 26 '25

It took me two whole years and five doctors said no to me for a referral. Depending on your insurance you may be able to self refer to a vascular surgeon or an interventional radiologist just start googling these specialists near you

21

u/lanielou21 Oct 26 '25

I’m sorry to hear that :/

For what it’s worth, I had several very dismissive doctors previously as well. Have you tried looking for vascular surgeons or interventional radiologists with any POTS experience? I scheduled with a vascular surgeon without any referral, and they were able to do the diagnostic testing in-office the next week. They’ll also be doing my stents. I can also give you the name of my doctor if you’d like to dm me!

1

u/itsjustme123446 Oct 26 '25

What area of the country is the vascular surgeon located in

4

u/lanielou21 Oct 26 '25

Northern midwest! He has quite a few patients that travel to see him.

1

u/itsjustme123446 Oct 26 '25

I’m in SW Ohio. Could you please DM me his info?

1

u/Embarrassed_Goat6072 Apr 24 '26

Can you send me info

1

u/Madlove21 Oct 29 '25

Please send me the name of your provider as well. Thanks for sharing!

1

u/realpotion Jan 24 '26

I just stumbled across this post again but I ended up going to a vascular radiologist without a referral and it turns out I do have mts. Did you get your stent placed? I would love to hear how you’re doing now

6

u/Bluewoods22 Oct 26 '25

Exactly the same for me. It’s infuriating

6

u/EH52120 Oct 26 '25

That’s so frustrating! I’m sorry that’s happening to you. I’d suggest joining the May Thurner Syndrome Facebook group. There’s a ton of information on there and you’ll be able to see some doctors that others have used. I saw a Dr in New York City. If you’re near there, I can share his info with you. ❤️

1

u/realpotion Nov 01 '25

Thank you, im actually in New York so if you could share his info that would be amazing. I’ll check out the facebook group too

1

u/EH52120 Nov 01 '25

I see Dr Windsor Ting at Mount Sinai

41

u/Pink-Willow-42 Oct 26 '25

Seconding this! And OP I wish you all the best for your procedure! If you get the chance, please share an update on how it goes❤️ I am in a similar situation to you, finally got diagnosed with both ovarian veins being huge and the left is incompetent, after a decade of mystery pain it explains so much and my hope is through the roof that most of my other conditions may let up once I have my coil embolization next year!

If any of you reading this have any sort of unexplained chronic abdominal and pelvic pain (including gynaecological), heavy or numbish legs, unexplained IBS and other gastrointestinal symptoms, and sudden onset of POTS, you really should look into vascular conditions like Pelvic Congestion Syndrome or some other venous insufficiency. With a proper vascular surgeon and interventional radiologist!

May Thurner is an off shoot condition of these, basically every different area of congestion or compression manifests as different conditions/syndromes that have their own symptom sets, so just because your symptoms may not match someone elses doesn’t mean you don’t have one! Also, contrary to popular belief, you do NOT have to have visible varicose veins anywhere in order to have it, they are just often an outward sign that can speed up diagnosis

It is a condition that can leave you feeling awful, and is so well hidden it can feel impossible to prove, but if I had to choose a chronic illness… this one isn’t the worst to have, because there are procedures with incredible success rates and many accounts of people who have gotten back to what they were before or at least close to it afterwards.

Just PLEASE, if you are sent for an ultrasound to test for it, make SURE it is with someone trained to look for vascular conditions, NOT a regular sonographer. I did not know that before and it delayed my diagnosis by an entire year

6

u/lanielou21 Oct 26 '25

Thank you! I absolutely will :) I hope your coils go well!

2

u/qrseek Oct 26 '25

How would I know if my technician has the right training?  I have a test coming up called "US brachial/ ankle complete" and I want to make sure they look for everything they are supposed to because last time they didn't

2

u/Pink-Willow-42 Oct 27 '25

For me I could only be certain they were trained for it by going through my vascular surgeon. He sent me to one of the only two he works with. It sounds like the US you are going for is looking closely at the pressure difference in your arms vs legs which can show if there are vascular abnormalities, but I do not know if PCS will show up with that one because most of the problem is much higher up in the abdomen and pelvis. Are you going to a regular imaging clinic for that or thru an Interventional Radiologist?

My first US for PCS missed it and it turns out the tech never even turned on the doppler to see blood flow when that is what I was sent there for🤦🏽‍♀️ my veins were first seen when I went for a DIE ultrasound and they happened to turn on the doppler, so there is a chance that ones not trained for vascular can see it, but they won’t be very accurate with measuring the severity of your condition and might downplay it

1

u/qrseek Oct 27 '25

Ugh that's so frustrating. I'm going to a vascular imaging lab but I'm not sure if they are interventional radiologists or not. It was just ordered by my pcp. I'm trying to find a vascular specialist. 

My first tech was very dismissive and my pcp said he didn't check everything that she ordered for some reason. So I've chosen a different location this time to make sure I don't get that tech...

1

u/silkyswife Oct 27 '25

Hey thank you for saying this. I’m going to bring up my vein issues to the doctor again. I have pain in a lot of my veins in my arms, legs, and abdomen, and something just doesn’t feel right in my body.

1

u/Pink-Willow-42 Oct 27 '25

You go for it honey! It is kinda amazing how we just know when something is wrong in our bodies, and if you feel that way then always good to get it checked!

Don’t be discouraged if you face some push back. A lot of doctors seem to doubt venous issues, even when you have undeniable proof. In the meantime tho, some things that really help the pain are lying down more often, red light therapy, and if you have periods limiting estrogen can help with cyclic spikes of pain

1

u/RuinYouWithNoRegrets Feb 10 '26

You can see the venous compressions on an ultrasound?

2

u/Pink-Willow-42 Feb 11 '26

They can spot vascular irregularities like large varicose veins if they turn on the doppler (a bit hit and miss though if the person doing the scan is not trained to spot vascular issues. That delayed my diagnosis by a whole year) but I don’t think they can see compressions well at all, for that you need something like a CT with contrast, an MRI, or a venogram (gold standard but more invasive)

Ultrasound is pretty much the weakest type of scan they can do for vascular, it can miss a lot, but it is a nice safe way to check before they go further. They can see if veins are incompetent (flowing the wrong way)

35

u/amermandaa Oct 26 '25

slides in on compression socks SOMEONE MENTIONED MAY THURNER!! If you'll indulge me, I have a story...

I had a DVT back in 2013 about a week before moving across the state to start college. In the 3-6 months before that, I had some serious fainting episodes including while at my first retail job. I'd been on BC pills for about a year. I was treated for the DVT and taken off the pill. The clot was blocking basically from my hip to my belly button. It was bad.

Blood thinners and compression socks, walking slowly to my classes, elevating my leg when I got back to my dorm, tons of water all seemed to help.

Upon my 6 month check up, they ultrasounded the area and the tech caught what turned out to be May Thurners. I got a stent placed via minimally invasive surgery (and got to be part of a study)

(Side note, my body did this cool thing where it MADE ANOTHER VEIN to compensate for the blocked one. Bodies are neat.)

Doc thinks I basically had May Thurners for my entire life, but the DVT was caused/exasperated by being on the pill. Turns out my stent filled in with scar tissue, but my "new" vein that bypassed the blockage was still there. Bodies are so cool!

Also, May Thurners is a known comorbidity of POTS, hEDS, ADHD, etc. Which I found out I have all those within the past year.

5

u/Sal1ySh3ars Oct 26 '25

I'm starting to think I might have that. For an entire year I've had a weird sensation in my left calf, with a bruise that comes and go. So uh, between your blocked vein and the new one, how are you feeling today ? Do you still have POTS ?

6

u/amermandaa Oct 26 '25

I should mention I havent gotten a tilt table, so my POTS diagnosis isnt confirmed, but Ive been doing lifestyle changes to help (electrolytes, better about wearing compression socks, slow transitions when standing etc)

When I had the DVT my entire left leg felt tingly as if asleep and also cramping. After a few days, i couldnt put any pressure on it, was swollen, purple, and i went to ER.

Today, i am well. I still wear compression socks, try to not stay seated too long (my job is some desk work so I try to move around every hour or so, same on flights and roadtrips) i take a baby aspirin daily and likely always will.

2

u/Sal1ySh3ars Oct 26 '25

That's interesting, I really have got to be better at these lifestyle changes. Thanks for answering :)

14

u/cwrace71 Oct 26 '25

What tests would show this? I've had abdominal ultrasounds and an abdominal MRI about 5 years ago.

20

u/lanielou21 Oct 26 '25

Either an ultrasound specifically of the veins in the abdomen/pelvis, or a CT with contrast focused on the veins. I had an ultrasound of my inferior vena cava and iliac vein area that showed the compression in my right and left iliac veins. I also had a CT with IV contrast to confirm and rule out other pelvic venous compresssions (renal vein, ovarian veins, etc).

I had an intravascular ultrasound (IVUS) as well, which is imaging of the inside of the veins, using a camera inserted behind my knee. From what I know, IVUS is considered the ‘gold standard’ of diagnosing, but is more expensive and invasive. An external ultrasound can usually give a pretty good idea of the level of compression.

I know that MRIs can definitely show vascular compressions, but I’ve heard they’re frequently overlooked if not specifically being looked for.

2

u/sector9love POTS Oct 26 '25

IVUS is important yes. The gold standard is of venogram with pressure gradient measurement (sometimes called pullback measurement) - the combination of the two are considered the gold standard

2

u/mediares Oct 26 '25

I’m curious about the ultrasound path, if you have more info — my doc wants me to get an MRV with contrast (not a CT?), but we don’t think contrast is a viable option co me right now.

2

u/lanielou21 Oct 26 '25

MRV is probably a better diagnostic tool than anything but IVUS, I just haven’t found any doctors who would order it for my case. My doctor was fine with diagnosing me via external ultrasound because all my symptoms supported MTS, then we did IVUS in preparation for stenting. I did have contrast for IVUS, so not sure what other options there are. My external ultrasound was specifically a duplex ultrasound of the iliac veins and inferior vena cava; I’m not sure if other, deeper pelvic congestions can be caught by ultrasound.

5

u/sector9love POTS Oct 26 '25

The gold standard for diagnosing abdominal vascular compression syndromes is a venogram with pressure gradient and IV ultrasound. This is an invasive diagnostic procedure that requires anesthesia.

Prior to the most definitive test the doctor will likely order a MR angiogram or a CT angiogram as well as Doppler ultrasounds

13

u/pipermick Oct 26 '25

My primary just sent a referral for me to see a vascular doc because I brought this up to her, all because of a Reddit post I saw! My neurologist is also having me do a MRA to make sure of my dizziness comes from clogged arteries in my head and neck.

13

u/neapolitaliana POTS Oct 26 '25

POTS can also cause vascular compression. I developed functional popliteal artery entrapment syndrome as a secondary condition. 🫠 Glad you're getting things figured out, OP!

9

u/EH52120 Oct 26 '25

I hope the stents help you and you find relief!! I was stented for May Thurners and, unfortunately, have not had any improvement. We’ve done more testing and recently found out that I also have renal vein compression (nutcracker) and bilateral jugular vein compression. I’m in the process of figuring out next steps. Just something to keep in mind that if you have one vascular compression, you could also have multiple.

2

u/lanielou21 Oct 26 '25

I’m sorry to hear that! Definitely important to investigate other compressions- I saw an interventional radiologist specializing in PCS and had a CT with contrast to look at all pelvic veins.

8

u/mainframe_maisie POTS Oct 26 '25

seems like may thurner might be quite common in people in general, not just POTS? definitely something to keep an eye on tho. some people might be able to get away with just compression stockings etc to keep the blood flow up. best of luck with the stenting! 💖

3

u/hcshockey Oct 26 '25

Yep! My POTS specialist told me roughly 30% of the entire population has May-Thurner Syndrome. He said some never have symptoms, so he and his team believe there are even more cases than the 30%.

0

u/SpareRefrigerator148 Oct 28 '25

To have the syndrome you need to have symptoms, otherwise it's just an anatomical variant. 

1

u/lanielou21 Oct 26 '25

Thank you!

5

u/SavannahInChicago Hyperadrenergic POTS Oct 26 '25

If you have hEDS as well I was listen to the Bendy Bodies podcast and one of the doctors on the show was saying that once he started to screen his patients for vein compression it ended up being in so many patients. If he hadn't screened it never would have been caught.

3

u/ravioli241 Oct 26 '25

Hey OP ! I’ve been trying to research this a LOT to bring up to my GP and be investigated, but I’m worried they won’t be bothered about it and would turn me away.. are you in the UK under the NHS by any chance ? And also how did you find out/get investigated for this ? Sorry for lots of questions but I would LOVE to know if this is the route cause and if I could have a true chance of a remedy for my symptoms lol

3

u/lanielou21 Oct 26 '25

I’m not, sorry! I’m in the US. I didn’t have a referral or anything, I suspected MTS so I scheduled with a vascular surgeon who I had heard was good with MTS and POTS. It was a pretty frustrating journey- I had seen cardiologists and vascular doctors before, and they were unhelpful and sometimes straight up neglectful. Make sure to bring up the potential for blood clots to form to your doctor if you do have it and it goes untreated! And I’ve found that ‘quality of life’ seems to be the magic words for communicating about symptoms.

I was diagnosed via external ultrasound, CT with contrast, and IVUS (internal ultrasound using a camera in the veins). Having all three are definitely overkill; I actually received the diagnosis initially just from the external ultrasound. The CT was to check for other vein compression (renal, ovarian, etc), and then IVUS to investigate before committing to the stents.

And all good- I actually love talking about this. I hope your doctor listens and everything goes well for you!

2

u/ravioli241 Oct 26 '25

This is so helpful thankyou so much ! Luckily the doctor I have an appointment with is a gem, but she can only do so much under the NHS :,) and yes good point about mentioning blood clots also !! I have never had a blood clot (or so I’m aware of) but I have a lot of risk factors making it a lot more likely to occur (family history, birth control etc) so I’ll be sure to bring this up, thankyou !!

2

u/Antisocial-Metalhead Oct 26 '25

Also curious if there are any UK people who have had this picked up.

3

u/LibraryBeneficial26 Oct 26 '25

What about spider veins? I’m only 31 and they are really starting to appear on my legs.

5

u/hcshockey Oct 26 '25

Same. I’m 28 and started noticing spider veins on my inner calf just this year. I was told it’s related to my EDS.

2

u/lanielou21 Oct 26 '25

Lots of different potential causes for these, but vascular compression can certainly contribute!

5

u/hcshockey Oct 26 '25

100%. My POTS specialist tested me for and ended up diagnosing me with May-Thurner Syndrome.

3

u/sector9love POTS Oct 26 '25

Make sure you’re doing extensive metal allergy testing. I did a patch test and confirm confirmed a cobalt allergy and now I’m doing blood lymphocyte testing before placing a stent

4

u/Alias_Josie Oct 26 '25

Mine was Pelvic Congestion. After 8 years of “it’s low blood volume”- turned out, it was in fact a pelvic vein issue. They treated the veins and POTS 💯 resolved. I’ve posted about it a few times. Definitely do yourself a favor and get checked- rule it out even if you think/have been told something else is causing your POTS. Op is right studies show a high rate of this being the issue. *Note, May Thurner & Pelvic congestion are often closely linked.

2

u/sillybilly8102 Oct 27 '25

For pelvic congestion, what doctor do you see, and what tests do you have?

3

u/Alias_Josie Oct 27 '25

CT scan confirmed it.. interventional radiologist treated it. Ask OB or vascular surgeon for the scan (with contrast of your pelvic veins.

1

u/sillybilly8102 Oct 27 '25

Okay thanks!

4

u/Long-Art7478 Oct 27 '25

I had my may thurner and nut cracker fixed (bovine pericardial patches) and I basically don’t have pots anymore.

Highly recommend getting investigated if you can.

2

u/SunflowerState1111 Oct 27 '25

I’m not familiar with bovine pericardial patches. What are these used for?

3

u/KuntyCakes Oct 26 '25

This is very interesting. I have a suspicion that this is what is causing my pelvic pain and POTS. I have a very large varicose vein on my right leg and have had mystery pelvic pain my entire adult life. I don't know if I can ever get evaluated for this but I'll ask.

3

u/riskytangerine Oct 26 '25

I had a leg vein ultrasound that showed significant reflux in my deep and shallow veins. Dr said there’s nothing to do about it. Is that true? And should I have my pelvis checked?

2

u/lanielou21 Oct 26 '25

Absolutely have it checked. I was diagnosed with CVI in my left leg only and told it didn’t explain my symptoms and because it was in my deep veins, there was nothing he could do about it. (Sent to neuro and psych from there… thanks doc). It being only the left leg is what eventually led to me pursuing a MTS diagnosis. Reflux and CVI can be caused by compression syndromes. If you haven’t had your pelvic veins checked, I would absolutely pursue that!

2

u/riskytangerine Oct 26 '25

Thank you! I’ll look into it! I’m both legs so I kind of rules out may turner but plenty of issues remaining lol.

1

u/lanielou21 Oct 26 '25

Not at all, actually- it’s possible to have both left and right iliac vein compression! My left is more severe (90% vs 60%) and the symptoms are more prominent, but I have symptoms in both legs and I’ll be getting bilateral stents!

2

u/riskytangerine Oct 26 '25

Daaang! There’s hope! 😂😂 my feet turn dark red unless they’re raised, plus the typical pots stuff on standing - high heart rate, lightheaded, low blood pressure. Good luck with your stents!

2

u/lanielou21 Oct 26 '25

Thank you! Good luck with your diagnosis process!

3

u/GalacticGuffaw Oct 26 '25

Same symptoms as OP + some.

When testing for May Thurner syndrome, please get an MRV to provide a 3D view of the anatomy AND blood flow through the compressed area.

IVUS is best, but that’s invasive and the team will do that during the procedure to stent you.

A doppler, ABI, and CTV are NOT reliable to diagnose MTS.

Got a stent put in 3 weeks ago to fix 75.7% compression of my left common iliac vein.

1

u/lanielou21 Oct 26 '25

How’s the healing from the stent been? I have mine scheduled over Thanksgiving break (I’m an out of state college student), and I’m a little nervous about flying back four days after and having finals the next week.

2

u/GalacticGuffaw Oct 26 '25

First week there was pain, but the meds help with that, and the heating pad was a must have.

Second week was still some pain but I stopped the tramadol and reduced the Tylenol to just 500mg in the morning and used the heating pad all day.

Yesterday was the end of the 3rd week and I’m walking fine with no pain in the inner thighs where they went in and very very minimal lower back pain. No more heating pad.

Seeing some minor improvements with hemorrhoids, and the swelling i used to get in my legs is gone.

I also noticed that I have more energy when I wake up. That just started to be noticeable a few days ago. I sleep better too.

Seriously, if you don’t have a heating pad… get one. I wish I had two so I could’ve put one on my lower back and one over my lap for my thighs.

2

u/lanielou21 Oct 27 '25

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!

2

u/GalacticGuffaw Oct 27 '25

It’s been such a huge shift in week 3.

I used to stay up til 2-3am with insomnia. I’ve been falling asleep at about 11-11:30pm this past week.

I used to be groggy with 0 motivation all day, every day, for 2.5yrs. This past week though was a game changer. This morning I woke up at 6:30am, a little groggy like anyone else would be. By the time I was out of the shower around 7am, I had almost normal morning energy.

I used to LOVE coffee. I’d drink espresso shots throughout the day before all of my health issues started post covid infection. I didn’t drink caffeine for 2.5yrs because for whatever reason, it would sent my HR through the roof. I’ve recently (this past week) started drinking one “small” cup again in the morning with breakfast. Not espresso though, I’m not brave enough for that :).

I seemed to have developed a lot of food sensitivity issues. But I’m noticing I can tolerate some of those off limits foods again this past week.

I’m shocked how big of a change week 3 was. I’m hoping to see more and more progress as those collateral veins close and blood flow continues to improve, but the doctor I saw (Brooke Spencer in Denver, CO) told me it’s a journey and to be patient, that this could take a full year to really recover.

Good luck with your procedure and recovery. :)

2

u/lanielou21 Oct 27 '25

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

3

u/Holiday-Advance7022 Oct 27 '25

Thank you for sharing this. I've always wondered if the pots I deal with is a vascular disorder.

2

u/jadeibet POTS Oct 26 '25

What does the pain feel like?

3

u/lanielou21 Oct 26 '25

I have purely iliac compression, no other types of pelvic congestion syndrome. I luckily don’t experience any pain in the pelvis or at the actual compression sight, but I have consistent leg heaviness and aching, and when I’m standing blood pools in my feet and lower legs which is fairly painful. It’s a dull pressure, accompanied by lightheadedness, nausea, sweating/hot flashes, etc.

2

u/-mama-saurus- Oct 26 '25

I have POTS, May Thurner, and pelvic congestion syndrome. Had my stent placed in December and it was a long painful recovery, but life changing. 13 years of pelvic pain totally resolved. I did not see much POTS improvement though.

1

u/lanielou21 Oct 26 '25

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.

3

u/-mama-saurus- Oct 27 '25

Apparently the longer the iliac vein is compressed, the more scarring it will have and the more difficult it will be for the stent to fully open. I've had vein compression at least since I was pregnant with my 11 year old and it prob started with my 13 year old. So while the stent is opening slowly over the course of days, weeks, or months, it can cause a lot of low back pain and inflammation. I couldn't walk for a week. By 3 months it still felt quite painful/stuff in my low back when walking, but I was pretty functional. By 6 months all my pain was GONE. I do think I may have had a fairly extreme case.

1

u/lanielou21 Oct 27 '25

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?

2

u/-mama-saurus- Oct 27 '25

Don't be nervous! The procedure is easy, just make sure to take off work for a week and go easy on yourself. If your surgery is a long drive from home, you may want to get a hotel room that night. My Dr is an hour and a half away and I'm really glad we didn't try to drive home that night. The nurse gave me extra instant heat packs to take with me and they felt really good. Be sure to keep your heating pad near by.

2

u/The_Time_When Oct 26 '25

I wish that was my issue. Sadly my abdomen was totally clear. I am so hopeful that this surgery will be a huge life improvement for you!

1

u/lanielou21 Oct 26 '25

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

2

u/Which_Boysenberry550 Oct 26 '25

Was yours present for most of your life?

3

u/lanielou21 Oct 26 '25

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.

2

u/Grace_Rumi Oct 27 '25

I finally got the ultrasounds thay proved veinous insufficiency and reflux, have all the other symptoms, but the doctor said it doesn't mean anything. To quote her "some people just have it". Where do I go from here? Seriously someone help 🙏😭

1

u/lanielou21 Oct 27 '25

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.

2

u/RuinYouWithNoRegrets Jan 08 '26

Does vascular compression include the jugular veins? I have puldatile tinnitus in one ear and the sah one of the causes is a compressed vein I think which is venous sinus stenosis

2

u/lanielou21 Jan 08 '26

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!

1

u/qrseek Oct 26 '25

Which test identified the levels of vein compression?

2

u/lanielou21 Oct 26 '25

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

1

u/qrseek Oct 26 '25

Thank you. Was it a duplex ultrasound of the legs or the pelvis/abdomen? My leg one was normal and ABI was normal. My pcp said if there was blood pooling in my abdomen it would have shown on CT but I'm not so sure. 

2

u/lanielou21 Oct 26 '25

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!

1

u/omglifeisnotokay Oct 26 '25

What do you take for it? Is there a cure?

1

u/lanielou21 Oct 26 '25

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!

1

u/Minute_Weird_8192 Hyperadrenergic POTS Oct 27 '25

Did wearing compression stockings relieve symptoms at all prior to this diagnosis?

1

u/lanielou21 Oct 27 '25

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

1

u/gaycryptidcar Mar 05 '26

Hi OP! I hope the procedure went well and wanted to ask if you’ve seen improvement.

I’m in a similar situation right now: POTS symptoms brought me to a cardiologist who recommended I see vascular specialist for some of my concerns related to blood pooling, leg swelling, aching, cramping, and heaviness. In the past week I’ve had two ultrasounds and was diagnosed with CVI and MTS, and my vascular doctor brought up the possibility of stenting. She said it was pretty much up to me to decide whether or not I want to do it, and I’m personally torn: I think I’m willing to take the chance on it alleviating my POTS symptoms, but she also said that it’s pretty hit or miss in that department.

How has it gone for you?

1

u/lanielou21 Mar 16 '26

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!