I was recently reading that someone with JVC had blood pooling in their feet. Is this a common symptom with anyone else?
Not a common side effect of IJV compression, but there are other vascular compression syndromes lower in the body that could cause that particular symptom.
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It does seem to be that for some members if they have one vascular compression syndrome, like VES, then they could be prone to others, like TOS, May-Thurner, or Nutcracker Syndrome of the renal veinâŚ
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Hi Jules, thank you for the reply.
Would the other compressions that you mentioned affect catheter venogram pressures in the head? I would not think so.
The reason I bring it up, is that when I sit, my pressures in my head skyrocket.
What @Jules is saying is if you have IJV, you probably have vascular compressions elsewhere, like May-Thurner or Nutcracker Syndrome, and it would be the âvascular compressions elsewhereâ (likely Nutcracker) thatâs causing the pooling in legs/feet. But itâs the IJV part of the compressions thatâs making your head pressure skyrocket. Iâm writing from experience. I have May-Thurner, Nutcracker, IJV compression and Eagle Syndrome, none of which have been surgically fixed. Head pressure can get so bad sometimes I tell my husband not to touch my head lest that touch causes it to âblow upâ. I know it wonât literally âpopâ but thatâs how bad the pressure feelsâŚ
You could see either Dr. Nagarsheth in MD or Pr. Scholbach in Leipzig, Germany, both who would do ultrasound imaging to see where the compressions are. There are other vascular doctors who could help you too, but these are the two I know about. (I saw Pr. Scholbach in May, on a trip from the US to Germany for another reason.)
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I do. I have may Thurner and got a stent in iliac vein in 2023. It was a game changer and Iâm better but I still have jugular compression. I also have cvi that was likely caused by iliac compression or just eds. I have myopathic Eds. My first cousin has blood pooling to the extreme. But idk why. I assume she has similar conditions as mine
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What are symptoms of May Thurners? How do I know if I have that?
May-Thurner syndrome is when your right iliac artery presses on (compresses) your left iliac vein. Your right iliac artery is the main blood vessel that carries blood to your right leg. Your left iliac vein is the main blood vessel that carries blood from your left leg back to your heart. May-Thurner syndrome may interrupt typical blood flow through your legs. Most people donât have symptoms of May-Thurner syndrome unless they develop DVT, or deep vein thrombosis. Symptoms usually only affect your left leg and may include feelings of heaviness, open sores (ulcers), pain, skin discoloration, swelling, varicose veins.
You would need imaging such as ultrasound, CT scan or Venogram to discover whether or not you have May-Thurnerâs.
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It could easily be a symptom of other venous congestion or compressions as noted. I immediately wondered about POTS as well. I think a lot of us with IJV compression and some degree of elevated intracranial pressure also have dysautonomia which can definitely cause blood pooling in the feet, purple feet and hands. Is that something you have looked at?
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I have bad pots symptoms. Low blood pressure. Standing was bad. Felt like I would faint. Now I anm out of bed every day. Today I returned to gym first time in 3 years for light exercise. A stent in my iliac and jugular helped. Really the iliac stent was the biggest improvement. Game changer. I have more of a life now
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@Kmoore464 - Iâm so glad that the surgeries youâve had have helped you feel so much better! Thatâs what we hope for every person on this forum. Did you have your IJV decompressed but it wouldnât stay open thus the need for the stent? Who did your IJV stent surgery (Sorry if youâve already told us. I either missed it or forgot).
Do you still have bad POTS & low bp symptoms or was that in the past? Iâm guessing they are in the past since youâre able to be up & out exercising now. What a âbreath of fresh airâ for you. 
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Thatâs really good to hear! 
Decompression on my dominant side failed. I still have severe compression at c1. Will try again with a new surgeon in may. Now seeing Hepworth. The low blood pressure is not an issue anymore I do wear compression socks and my iliac e stent really helped a lot. My jugular stent is tiny and not helpful but it is flowing per post procedure testing
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Dr. Hepworth is a good choice for round 2. I recall your story now & am sorry youâve potentially got to go through surgery again!
Iâm glad that youâre able to see Dr H, so rough to have surgery & for things not to improve⌠
My daughter had three abdominal compressions fixed by Professor Sandmann in Germany this year. she has much improved from the severe blood pooling she had in her feet and arms. Prior to surgery she had to wear travel socks when leaving the house to prevent nausea and leg swelling and cold sweats in her feet. Her feet could not hang down for more than a couple seconds and they would be reddish purple. She also had daily complaints of numb legs. Yes, both legs were affected but the left was more severe. Now since surgery she no longer needs those travel socks and wears mild compression socks daily to keep her feet warm. The illeac vein to her left leg was adhered to the bone from the major compression of the ligament pressing on the vein. A stent was wrapped around the vein to allow proper blood flow. No blood flow was getting thru that vein anymore and it was rerouted across her pelvis to the right leg. That vein was double in size from the massive blood volume and then the blood was rerouted up her spine to her head and heart since the renal vein was compressed also. Yes, the extra blood traveling up the spine can cause severe pressure headaches as the blood cannot get where it is to go. She still has severe headaches but we found out also while in Germany from the ultrasound Professor Scholbach did for diagnosing the vascular abdominal compressions that she also has jugular vein compression. She just had the CTV done of head and neck yesterday and now we are waiting to hear from Dr.Hepworth what the next step may be. Dr.Hepworth says when one has Nutcracker syndrome they most likely have IJV compression as well. He said what the reason is but we do not remember, do any of you know?
My daughter still has numb left leg at times even though it is 9 months post surgery. Does anyone have an idea what still could be the reason? Is it possible the body would take some time to readjust? Or did the body develop collateral veins around the massive compression?
Luckee7, If you have an ultrasound to rule out May-Thurner just be awareâŚ. the tech will find no problem if you are lying down for just a few minutes before the procedure. Be sure to lie for at least 10 minutes and then see the difference. My daughter showed no problem with the illeac vein before the Germany diagnosis because the tech always checked immediately after lying down.
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Iâm sure Iâm not the only one.
@Kmoore464 - Indeed you are not the only one. Itâs always sad for us to hear of a decompression not working no matter the reason. Thankfully there are some amazingly skilled surgeons in our country so where one doesnât succeed thereâs a good chance another one will.
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@BuckeyePrincess - Youâve asked some hard questions. Your daughterâs intermittent leg numbness may yet go away with more time. It sounds like the nerves that were affected by the lack of blood flow are still waking back up & need more time for recovery as you suggested. I have first bite syndrome from my first ES surgery which was 11 years ago. Over the past 11 years itâs been gradually disappearing & is finally nearly gone now. Doctors will tell you it can take from 12 to 18 months for full nerve recovery in an injured nerve. Iâm here to say it can take much longer than that. Nerve recovery is a very slow process so there is still a good chance your daughter will notice continued but gradual improvement in her left leg.
Though I know this is the case, I have always looked at from the top down i.e. a number of our members whoâve had IJV compression have subsequently discovered they also have things like TOS, MALS, May Thurner Syndrome &/or Nutcracker. Alongside those can be MCAS, ME/CFS & POTS. Itâs a lot for one body to bear!
Iâm glad your daughter has gotten some relief from her lower body compressions & hope that once her IJV(s) are decompressed sheâll feel tremendously better over time as her body adjusts to the new level of blood flow & as she heals from the surgery. 
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I am hopeful how are you
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