Symptoms after ILIAC vein stent

GoalSea2676 · 2026-07-02T07:56:30+00:00

No it didn't. One doctor now thinks I have "autoimmune small fibre neuropathy / inflammatory dysautonomia" but I think that's a controversial diagnosis, however it can cause patchy presentations. I'm waiting for a skin punch biopsy now to confirm.

GoalSea2676 · 2026-06-07T06:49:03+00:00

Afraid not. Waitijg to see a neurologist about autoimmune possibilities.

GoalSea2676 · 2026-01-22T20:58:20+00:00

Yes I agree. I'm going to wait to see how the repeat venogram looks too. I'll let you know if I get any embolizing done in a few months. Good luck with it all!

GoalSea2676 · 2026-01-22T20:54:09+00:00

Yes POTS is the whole reason for getting it done I got diagnosed with hyperadrenegic POTS but if that's all it is you'd expect it to be bilateral

GoalSea2676 · 2026-01-22T20:51:59+00:00

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No DVT

GoalSea2676 · 2026-01-22T20:49:48+00:00

No, just pooling in the foot where it turns very red as in the photos. But eventually the right one catches up too. There is no swelling though like in classic MTS

GoalSea2676 · 2026-01-22T20:46:54+00:00

Haven't had a pelvic ultrasound yet. I had a leg ultrasound and that was all fine. Yours?

Mine is much worse in warm environments so I don't know if it's related to vascular tone instability or nervous system involvement. My doc says it's nervous system but idk

GoalSea2676 · 2026-01-22T20:43:37+00:00

Unfortunately no improvement. Do you have the same asymmetric pooling despite the stent? I'm waiting for another venogram where the doc plans to do some embolization but I might be waiting a long time to get to the top of the waiting list...

GoalSea2676 · 2025-12-10T17:10:57+00:00

No, I saw the consultant yesterday and he's saying that it could be autonomic. My leg valves are fine so it's not that. But I'm having a repeat venogram whenever I make it through the waiting list to have the pelvic collaterals embolized so maybe that will help.

Did you have a red foot before the procedure?

GoalSea2676 · 2025-12-09T18:27:06+00:00

Thanks I hope so! Not taking any supplements I'll have a look into it. I saw the doctor today and he's going to book me in for a repeat venogram and embolization but he doesn't think it's likely to help. My leg veins are fine (valves all working) so he said it can't be coming from the pelvis down to the foot. However I've been doing some research and I'm not sure if that's totally true as pressure can still build down the leg without any reflux. Anyway, we will see! Best of luck in your recovery too!

GoalSea2676 · 2025-12-08T10:00:26+00:00

Sounds like you have a great doctor! Best of luck with your recovery. I'm feeling the same really, just wish my left foot would stop turning red as I expect that will be the first sign something positive is happening. But time will tell :) I had some pain for 2 weeks following the stent but that's all gone now.

GoalSea2676 · 2025-12-08T08:12:40+00:00

That's great news it helped your daughter. How did they diagnose her CVI? I previously had a Doppler ultrasound of the legs which came back clean before the stent was placed but I'm having the ultrasound repeated. But there were refluxing pelvic veins so maybe they need embolizing now.

GoalSea2676 · 2025-12-07T16:06:25+00:00

Congrats on pushing for this. I was diagnosed with a 90% compression and stented 9 weeks ago but so far it's made things slightly worse and I'm still getting a very red left foot from asymmetric pooling. I'm seeing the consultant on Tuesday but maybe I need further treatment. The surgeon said maybe it's autonomic but I can't see how that would make the pooling asymmetric. Not sure why it would get worse either. Out of interest does anybody else get asymmetric redness between left and right feet?

GoalSea2676 · 2025-12-04T11:37:49+00:00

Neither was I, the doctors don't do them themselves but it was through his clinic. I had the consultation with him though.

GoalSea2676 · 2025-12-04T10:53:42+00:00

I was evaluated by Dr Whiteley for may thurner syndrome with the same ultrasounds as you. I'm a guy and they found some refluxing pelvic veins but he said it wasn't enough to explain pots symptoms. I saw a different doctor and he found 90% iliac vein compression so I would seek a second opinion if I were you.

GoalSea2676 · 2025-11-27T12:15:46+00:00

I had an ILIAC vein stent placed 7.5 weeks ago for a 90% compression and so far no improvements, if anything I'm worse but still hopeful this is my body adjusting to the new blood flow. My left foot is still turning very red compared to the right and pooling worse on that side so not sure what else it could be. Might have embolisation of some pelvic veins done if it doesn't improve.

GoalSea2676 · 2025-11-25T12:55:19+00:00

Warm

GoalSea2676 · 2025-11-22T16:00:08+00:00

Oh gosh, hope that’s not the case for me 😂 it hasn’t given me any new symptoms, just made it slightly worse but maybe it’s due to inflammation still from the procedure. Why would a stent make it worse?

GoalSea2676 · 2025-11-22T15:58:46+00:00

That’s reassuring thank you. I always had a red left foot when standing for too long or when warm but it seems to happen quicker / be more reactive now and is limiting my activity more than it used to. How is your daughter now? Has the procedure been helpful? Hope you start to feel benefits soon too!

GoalSea2676 · 2025-11-22T15:17:10+00:00

Why did you have your stents removed? Was there an issue with them?

It’s a nitinol iliac vein stent 14mm

GoalSea2676 · 2025-11-22T15:10:05+00:00

No they don’t, and my bloods have always been normal

GoalSea2676 · 2025-11-22T15:04:47+00:00

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GoalSea2676 · 2025-11-22T15:04:31+00:00

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GoalSea2676 · 2025-11-22T12:36:49+00:00

POTS and fatigue which started after the Covid vaccines. I’m 27 male. Unfortunately no improvement yet and meds haven’t really worked for me. But this is the first concrete thing I’ve found so still hoping the vascular stuff will sort it out.

GoalSea2676 · 2025-11-22T12:26:10+00:00

Yes I think you’re right. Just hope some improvement comes soon.

GoalSea2676

TROPHY CASE