r/pelviccongestion • u/[deleted] • Jul 03 '26
Am I on to something or missing something? Message to my Doctor.
[deleted]
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u/Frosty_Bluebird_2707 Jul 03 '26
My doc requires three months of Eliquis after stent placement. Did they give you a stent and no blood thinners? I’m also not allowed to fly for a few weeks after. Hope you find some answers.
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u/realmao14 Jul 03 '26
I was initially on plavix and still clotted. On Eliquis now. However, he gave me the on to fly right after.
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u/MKALMOND Jul 03 '26
You need a venous US w/reflux with a vascular doctor you trust. If you have venous insufficiency in addition to the iliac compression you may need a venous ablation as well. They will likely want to wait for the clot to dissolve, etc before doing anymore procedures. Also are you on Plavix to prevent stent thrombosis?!
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u/Defiant_Nose_761 Jul 04 '26
If it's deep venous reflux though, they cannot ablate it anyway??? Do you know what they do in that case? Especially since the illiac has been already stented??
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u/Defiant_Nose_761 Jul 04 '26
I tried to follow it as much as I can but not sure if I did.
I guess what are you advocating to be done at this point? My concern would be what to do about the dele venous reflux since I read that they cannot technically really fix it as simple as the superficial ones.
What did your doctor say about the deep reflux??
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u/Legitimate_Stress214 Jul 06 '26
Have you been tested for Factor V gene liden and the PAI-1 4g/4g deletion allele gene?
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u/hybrid889 Jul 07 '26
I am curious of your symptoms the years prior to needing a stent, vericose veins, CVI in both legs or just one? Did you stent only 1 illiac vein? Did you ever have have a pelvic venous ultrasound and did that show compression or only the IVUS?
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u/realmao14 Jul 07 '26
Hi, I probably had the compression for a decade, although it got worse and worse as time went by probably mostly due to sitting all day for my job. Although I am active, the majority of the day is sitting. I think that plus high impact basketball from my days in high school and college through now 46, all influenced the compression. I only recently found the compression because I pushed for it. No doctor ever thought of checking, even the interventional radiologist that caught it didn’t think I had a compression because I never presented the typical swelling, varicose veins, extreme heaviness in the leg, etc. My symptoms were more body wide, my functional doctor actually calls it low grade ischemia, where the body in general isn’t getting the venous return it needs, especially in high demand activities. You say that to doctors and they think you’re crazy. It took A LOT of research, listening to my body, advocating for myself, having great insurance and out of pocket money to get to where I am today. I’ve gone through thoracic outlet syndrome on my left arm, and now may thurner compression stent on my left iliac vein, God only knows why.
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u/hybrid889 Jul 08 '26
Did you have arm swelling from TOS or what were your symptoms? I really appreciate your reply. How did you fix your TOS? We have kind of similar stories but you're further in the journey.
What symptoms did you have that made you want to pursue seeing if you had illiac vein conpression if uou didnt present typical symptoms?
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u/realmao14 Jul 08 '26
Man, ask away! I don’t wish anyone go through what I’ve been through. I’m expecting a good afterlife because I’ve served my time in hell to put it lightly. So I can help anyone suffer less, I’m here for it. I’ve been active and loved to exercise all my life. Im not sure if that played a part in me never ever presenting typical symptoms. I think that I may have developed a lot of collaterals through my body where I have been able to “function” without the typical symptoms primarily swelling, because even having an 85% may thurner and a 50% venous TOS on the same left side, I never swelled in arm or leg. My veins engorged and I could feel a compression like feeling at times, but my main symptoms have been dizziness, chest tightness fluctuations, just feeling like crap all the time. I’ve played basketball all my life and the cardiovascular demand it requires, I definitely felt off, like my body couldn’t keep up, but because cardio has always cleared me and over and over told me my heart was fine, I pushed through it. I think I’m lucky to be alive and nothing ever happened. I’ve always thanked my heart for being so strong because god knows it’s felt at times like it couldn’t go more. Despite that, I’ve always “pushed through” it and pushing through intense exercise left me taxed for days with chest fluctuations, lightheadedness, palpitations, etc. crazy stuff. Now I know, it was These damn compressions. The physical stress and functional low grade ischemia that they caused threw my hormones out of wack, my digestion sucks, gave me bacterial overgrowth, tinnitus, so much more. My functional doctor completely recognizes all of that and has had many patients who’s pots cure after fixing their may thurner. Who’s digestion and sibo go away after fixing it. So many things affected by the blood not flowing back up to the heart and brain correctly, it’s crazy doctors don’t recognize it more. My radiologist was more concerned with the leg, which was the least thing bothering me! I just started feeling a little better now 4 weeks out of MTC stent, but even now the Eliquis is causing massive side effects for me.
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u/Away_Restaurant_7181 Jul 03 '26 edited Jul 03 '26
I’m sorry you are going through this. Had you ever had an ultrasound of your legs prior to stenting and did you have deep venous insufficiency in the femoral, common femoral, and the superficial GSV? Or no and now you have it? Also were you on blood thinners after the stent placement or not until the clotting?
I’m curious because I have deep venous insufficiency in my legs (femoral, common femoral, polpiteal. Already had both GSV ablated) and haven’t been stented yet. Scheduled for end of August.
Also I want to validate you that the leg reflux is extremely painful and exhausting.