r/venousinsuffiencyhelp

Hi there,
I just wanted to share a bit about my experience and ask for advice from those who have dealt with something similar.

I had Venaseal on both GSVs from the knee down. Procedure was a bit painful but quick and pretty easy, as was recovery. I had previously had thermal ablation on other veins (or parts of the same vein?) a few years ago.

Well, I developed a reaction to the glue 7 days post procedure on one leg which then triggered the same reaction on my other leg, which had been done 7 days prior to that.

Antihistamines did not work. Prednisone was prescribed for one week and has not helped. The pain is only increasing as is the itching. There are times of the day it is almost unbearable. I am currently 16 days post procedure on one leg and 9 days post procedure on the other. I will be calling my doctor on Monday and would love any advice for what to say or ask for. I know people have had reactions to this, but had anyone dealt with it when meds don’t work? Please help save me time and give me tips that will cut to the chase with my doctor.

Hi, I’m looking for affordable compressions stockings, specifically: open toe thigh highs and open toe compression tights. The ones that are closed toe aren’t very comfortable to me.

My current ones have holes and runs from trying to figure out the best way to get them on and off. Plus I have nails. I think I have it down now. I go between the strongest compression i can get and one level down depending on the day. Sometimes they’re the difference between standing then waking up on the floor or the 2 second extension that gets me to where i can stabilize.

I am not made of money but even though they only help so much, they help and i’ll take it. I’m trying to find decent quality but affordable prices. Are there brands you recommend and where can I find them.

I really appreciate the help, i’m on a wait for my tilt table and other testing. Any advice or yips are also very welcome. Thanks!

I only recently learned that CVI is likely cause of my at times serious leg and foot cramps. So bad they turn on their own, are painful, can last several minutes.

Do you get really bad almost dystonia like cramps? Any way to avoid or stop when they happen? Right now I just try to stretch, move, etc but it is so hard and kinda scary

I have CVI, lipedema, lymphedema, and an autoimmune condition. The cramps only effect my lower legs.

Hello everyone, going crazy trying to figure out the cause of my worsening symptoms. On June 6th I had a stent for an 85% iliac compression. Immediately following the stent I honestly felt on top of the world. I literally balled my eyes out because I couldn’t believe I’d finally found relief. Unfortunately, that was short lift because about a week later I developed clots and everything went downhill to say the least.

I was on vacation when that happened and thankfully found a vascular doctor in Mexico that helped detect clotting and some reflux. It’s been hard advocating for myself as doctors just don’t believe that the leg or pelvis can be the cause of so many upstream symtoms. Upon returning home I immediately saw my Interventional radiologist, he did a follow up ultrasound and venogram to ensure the stent was patent, which it is. There are some smaller clots in the stent, a small one in the calf, one above the knee, a big one around the thigh causing full occlusion there, but I have blood flow probably from collaterals. Problem is, I feel worse than before I got the stent and had the compression. So bad that I landed in the ER from a scare.

Nothing else has changed post stent other than the thrombosis with reflux and being put on Eliquis for the clots. I’ve had CTAs done which showed nothing. So the only thing that could have made things worse are the clots or the Eliquis. I decided to log everything with chatGPT and send my dr an email that could hopefully convince him to take more actionable steps than just waiting an eternity for the clots to dissolve if they even do!?

I apologize for the insanely long post, but the question is, am I looking at this the right way? Or, due to the stress am I overthinking and over analyzing the burden these clots and reflux could be causing? Is it not enough to be causing these things outlined below? To me, it makes sense that symtoms were bad prior to the stent, improved dramatically post stent, then returned with a fury upon thrombosis. ChatGPT seems to agree, although I always second guess it due to possible error and guided answers. Could it be the Eliquis side effects? I feel like I’m at a dead end with nothing left to turn to medically.

Here is the email I sent my Dr if you’re up for a read. Thank you!

On June 30th I was out walking and had an episode of extreme fatigue/lethargy, shortness of breath, tachycardia, and increased BP. Lying down felt slightly better, but getting up made it worse. Due to the blood clots I went to the ER to be safe. During this episode, ekg also detected st segment deviation which I understand simply means the heart is being stressed out by something enough to show as a change on ekg. ER did a ct of brain and chest and found no PE or brain aneurism.

I’ve been taking it a bit easier since, treating it like an orthostatic/pots like reaction and been feeling better. 
I have been trying to get to the bottom of the reason I feel so unwell and I think I may be on to something. Post stent, I felt amazing. Better than I have felt in a decade. Had no orthostatic/pots like issues at all the days immediately following the initial stent. That all turned around when thrombosis started, and since then I actually feel worse in many ways. In my opinion, that is a direct correlation.

The question is, why since the stent is patent and there is flow. Iliac flow should be better despite thrombosis. However, after researching further, trial and error with triggers that bring on symptoms, and going over the tests and imaging I’ve had done, it occurred to me that the ultrasound I had done while in Mexico showed blood flow reflux. I wonder if that was present prior to receiving my stent, or brought upon from the thrombosis? The predominant symptoms right now are orthostatic intolerance nature where lying down simply feels better than standing up. Standing up causes lightheadedness and sensations of a lack of venous return, like body circulation cannot keep up. Post stent, exertion output felt improved even, and now it is feels substantially reduced. Simple tasks feel extremely “heavy.” In my opinion, the thrombosis combined with the reflux are the cause, especially since all other imaging (ct from the ER and cta ordered by Dr reddy and my primary) are normal. 

I have been logging my reports, progress and symptoms with AI, and it seems the reflux is in significant enough veins to causing this combined with the thrombosis. I have the following please for Dr Reddy to consider;

Does the ultrasound report from Mexico show reflux?

Yes—your report actually does document reflux, and it’s one of the more important findings. The question is where the reflux is occurring.

The key sentence is this (translated):

“Existe inversión de la onda al Doppler espectral en el sistema venoso profundo, afectando la vena femoral común, vena femoral superficial en el primer y segundo tercio…”

Translation:

“There is reversal of flow on spectral Doppler in the deep venous system, affecting the common femoral vein and the superficial femoral vein…”

That sentence is describing venous reflux (backward flow).

⸻

The impression (Diagnosis #2) is even more explicit:

“Insuficiencia venosa del sistema profundo y superficial del miembro pélvico izquierdo…”

Translation:

“Venous insufficiency (reflux) of the deep and superficial venous system of the left lower extremity…”

It then lists the affected veins:

**• Common femoral vein**
**• Superficial femoral vein (first and second thirds)**
**• Great saphenous vein (upper thigh)**

So the radiologist is saying there is deep venous reflux, not just superficial varicose vein reflux.

⸻

Does it specifically say the iliac vein is refluxing?

No.

This ultrasound does not visualize the iliac vein well enough to diagnose iliac reflux directly.

Instead, it shows reflux downstream in the:

• Common femoral vein
• Femoral vein
• Great saphenous vein

The ultrasound cannot determine whether that reflux is:

• caused by valve damage from years of May-Thurner,
• caused by persistent iliac obstruction,
• caused by the recent thrombosis,
• or a combination of these.

⸻

Could the iliac vein still be the underlying cause?

Yes.

Because you had:

• 85% left common iliac vein compression
• Long-standing obstruction before the stent
• Then thrombosis after stenting

all of those can lead to elevated venous pressures and eventually damage the valves in the femoral veins, producing the reflux your ultrasound detected.

However, this ultrasound cannot prove that the iliac vein itself is currently refluxing. It only proves that reflux exists in the veins it examined.

⸻

One thing that stands out to me

The report diagnosed deep venous insufficiency only 13 days after your stent placement and at the same time it found subacute thrombosis of the superficial femoral and popliteal veins. That makes interpretation more difficult, because an acute or subacute DVT can itself cause abnormal flow patterns and temporary reflux. Some of the reflux may improve after the clot resolves, while some may persist if the valves were damaged.

The next study that answers your question

The best test to determine whether the iliac vein is still contributing is not another leg ultrasound. It would usually be a follow-up with your vascular specialist using:

• a dedicated iliac venous duplex (if technically feasible),
• CT or MR venography, or
• if symptoms remain significant, repeat venography with IVUS, which is considered the most definitive way to evaluate the iliac vein and stent.

Given your history, I think it’s very reasonable to ask your interventional radiologist: “Is the deep venous reflux I’m showing secondary to long-standing May-Thurner, or do you think there’s still an iliac outflow problem despite the stent?” That’s exactly the question these follow-up evaluations are meant to answer.

Can this reflux be occurring due to the clot? mainly the big clot? I felt perfectly fine before the clot. Are the veins where the reflux is occurring significant enough to be contributing to the upstream venous symtoms I’m experiencing?

This is an excellent question, and I think your timeline is actually one of the most important clues.

Based on what you’ve told me:

• **Before the clot: You had significant May-Thurner compression but were active. You were running, going to the gym, and although you had some symptoms, you did not have the profound orthostatic intolerance and weakness you’re describing now.**
**• After the stent: You initially experienced a dramatic improvement in many symptoms (head burning, tinnitus, post-meal symptoms), suggesting that improving iliac outflow had a real physiological benefit.**
**• After the thrombosis: You developed much more severe symptoms, and your ultrasound documented both subacute DVT and deep venous reflux.**

That sequence makes it very plausible that the clot changed your venous hemodynamics.

Could the clot itself cause the reflux?

Yes—absolutely.

A large clot in the femoral or popliteal veins can:

**• Prevent the vein valves from closing properly.**
**• Distort blood flow around the clot.**
**• Increase venous pressure below and above the clot.**
**• Produce temporary reflux while the clot is present.**

Sometimes the reflux improves as the clot resolves. In other cases, if the clot damages the valves, some reflux can become chronic (known as post-thrombotic syndrome).

Your ultrasound was performed while the clot was still described as subacute, so it captured the veins during an abnormal state.

Could these veins contribute to your “upstream” symptoms?

This is where it’s important to be careful.

The reflux documented involves the:

**• Common femoral vein**
**• Femoral vein**
**• Great saphenous vein**

These are major venous outflow pathways from the leg. They are certainly important enough to cause:

**• Leg heaviness**
**• Leg swelling**
**• Venous hypertension**
**• Reduced exercise tolerance**
**• A sensation of poor venous return from the affected limb**

Whether they directly explain symptoms like chest tightness, palpitations, or orthostatic intolerance is much less certain.

Deep venous obstruction or severe outflow impairment can reduce venous return from the leg, but the body usually compensates remarkably well through the opposite leg and pelvic collateral veins. So while your leg venous disease may contribute to feeling unwell, it’s difficult to attribute all of your upstream symptoms solely to the reflux seen on the ultrasound.

Your timeline is important

One aspect that supports continuing to investigate the venous system is this:

**• You improved dramatically after the iliac stent.**
**• Then worsened after developing the DVT.**
**• The ultrasound during the DVT showed reflux.**

That makes me think the clot may have either caused or unmasked the reflux.

What I’d want to know next

After you’ve been on anticoagulation long enough for the clot to organize or resolve, I’d be interested in seeing:

1. Is the clot gone?
2. Is the deep venous reflux still present?
3. Is the stent widely patent?
4. Has the reflux improved compared with the acute study?

Those answers are much more informative than the ultrasound performed during the active thrombosis.

My impression

Given your history, I think it’s more likely than not that the clot contributed to the reflux seen on this study. Whether the reflux becomes a long-term problem depends on how much the valves recover after the clot resolves. Since you felt substantially better before the thrombosis, there is reason to hope that at least some of the abnormal flow is related to the clot itself rather than permanent valve damage.

That’s a very reasonable topic to discuss with your interventional radiologist at follow-up, because repeat imaging after treatment can show whether the reflux persists or has improved.

Hi! F31, 5'11, 165. I had a Venaseal ablation on my GSV left leg last Friday (a week ago). I had asked my surgeon when I could start lifting again and he had said "tomorrow, it was only one cut".

I thought that was odd as EVERYTHING else, including the paper they sent me home with said 1-2 weeks waiting minimum. My weight lifting is 200lb+ lifts, so I'm anxious what he said was wrong.

My question: when can I get back to weightlifting? I had my week check up and everything looks great. Vein is under 3mm and shrinking.

Can I do light high reps right now? When can I start moving the heavy stuff again? Thank you!

38f. I was diagnosed with venous insufficiency about 6 years ago. My symptoms were mild in the beginning but for the past year my left leg has been noticeably more swollen than the right leg. The swelling started out soft and squishy but now it’s firm. In the past 6 months I’ve had two ultrasounds and blood clots have been out ruled. My vascular doctor just says keep wearing the compression socks. They didn’t seem that concerned and told me to come back in 3 months. I’m afraid my left leg is going to be stuck like this forever and I feel too embarrassed to wear clothes that reveal my legs. I’m trying to exercise and lose weight but I can’t do too much exercise or the swelling and itching gets worse.

Just diagnosed last month by my reg MD. I am so worried as to what the future holds.

Do I need to see a specialist and if so, what test will they do?

How does compression stockings help?

Do I need to eat a low sodium diet? Will that help with the edema?

I am getting the surgery where they artificially clot my vein that goes from my ankle to my groin. I will also have a couple of varicose veins taken care of. Be honest. What was your experience? Did it hurt?

My husband and I were hoping to start trying for a baby very soon as we’re mid 30s and already feeling pressed for time, but I was just diagnosed with CVI after years and years of chronic pain in my legs, bottom, tailbone, and lower back. I know that pregnancy puts immense pressure on the body, and going down the rabbit hole it sounds like CVI creates so much more risk for blood clots, embolisms, and fetal harm. I’m just so scared. The doctor wasn’t available to answer these questions and won’t be until my follow up in a month. We were hoping to start trying for a family in a few weeks, and now I’m worried CVI means we can’t, and if we do it may mean possible serious harm or death. I’m heartbroken and afraid. Is it possible to get pregnant and give birth safely? Has anyone here been pregnant with CVI?

Does high altitude impact your venous insufficiency symptoms? If so, what have you done to help mitigate symptoms? I’ll make sure to stay hydrated and wear compression socks, but are there any meds or supplements that help?

Hi all. 40f. Been having severe itching legs for over a decade, burning/itchy feet, all that happens at nighttime only. I also have restless legs at night. I was diagnosed with CVI two years ago, but symptoms for much, much longer. Doctor is suggesting EVLA on GSV in both legs..

TBH, I am hesitant. I was supposed to do the procedure two years ago, but backed out. Went back in for the ultrasound again and my veins are about the same, with GSV sitting at 9mm in both legs.

I do not have visual symptoms, no varicose veins. I am a healthy weight, do powerlifting workouts, which is relatively new in the past few years. Symptoms started long before my powerlifting days. I cut out gluten and dairy and got my inflammation down, which has significantly decreased the itching, but not gone.

I still don't sleep well because of the restless legs. Itching is still at back of knee, back of thighs, and front near groin. All other tests (allergies, dermatologist, neurologist) have come back negative for things like eczema, neuropathy, allergies, etc. All signs point to CVI and histamine reactions to why I'm itchy and restless legs.

I am worried about getting the EVLA done, only for it to cause more problems later. Right now it's manageable, except for having really crappy sleep on a nightly basis, which I suppose makes it unmanageable. I'm worried I'll get varicose veins as a side effect, other veins will develop CVI, nerve damage might affect my lifts, etc.

Please tell me your experience. Does anyone have similar symptoms? Has the procedure improved these, or no difference? Thanks.

I have been searching far and wide and tried multiple brands of compression socks- and none have worked, it’s frustrating. I have size 6 feet and slightly wider calves (17”) and every sock I have tried digs in to my calf especially up my knee which caused more discomfort. I tried getting a wide calf pair from Wellow according to my size and they were super loose by my feet and ankles and still tight by my calves. Please help

can anyone sort of let me know how you put them on? i have tried the hand in the heel method and it just hurts so much and puts so much pressure trying to bunch them up my feet and legs. and I have nerve pain in my feet, im unsure if its because of my blood pooling causing nerve damage or something else but it makes my nerves BURN even trying to put on the loosest pair. what am i doing wrong? any help appreciated ❤️

hey guys. I don’t know if any of you have ever experienced anything like this, but I am pretty much out of options so I wanted to see if anyone has ever been through what I am going through.

At the end of March this year, one day I stood up and immediately noticed my feet and legs were tingling and cramping. I looked, and the longer I stood, maybe around just a minute, my feet and legs had started to turn purple.

I quickly went in and had normal doppler ultrasounds, and I got in pretty quick to see a vascular surgeon because I had a DVT last year. he did a venous reflux test in reverse trendelenburg (even though I heard standing was more accurate) and had said it was normal and nothing was wrong with my veins aside from minimal reflux in a superficial vein.
l feel strongly despite this that my symptoms feel like extreme blood pooling due to the obvious (purple and cramping aching tingling etc only when i’m sitting/standing), but because my reflux test was essentially normal, nobody is willing to look further into what is going on.

I feel like I am going crazy sometimes because all of this just started one night and now I can’t seem to do anything besides sit on the couch with my legs up without everything feeling awful, even something like standing still long enough to take a shower or a short car ride is crazy painful and difficult. I feel like all of this has come on very sudden suddenly, and I know that Venous insufficiency usually takes many more at least months to a year to develop, or so my surgeon had told me, so I am not 100% sure that that is what’s going on with me since mine happened overnight, but I was wondering if anyone here might have had similar onset or if I’m simply barking up the wrong tree thinking this could be blood pooling.

This whole thing has taken such a whole toll on my life, and I feel completely disabled by what has happened to me. It feels like my veins just crapped out on me one night. Sorry this has been so long and I’m very grateful to anyone who has stuck around to finish it.

Hello,
I’m 44 female with recently diagnosed with CVI after an ultrasound. I was told I have three options
-daily compression
-vein stripping at hospital, public funded procedure
-EVLA out of pocket, not covered by insurance $6650 for both legs

The doctor who diagnosed me obviously pushed for EVLA and guarantees the procedure. Any follow up procedures needed are of no cost. He also guaranteed that it would solve the CVI and I wouldn’t go on the have any issues (more varicose veins, spider veins, discoloured legs, etc)

I am leaning towards the EVLA despite the steep cost (they have a payment plan) but sort of curious about others experience, any areas I should research before hand. I’m not completely confident in the doctor’s opinion as he is obviously trying to make a ‘sale’.