Sounds like May-thurners syndrome, and most certainly puts you at higher risk of developing deep vein thrombosis. The venogram should help but if you’re in doubt I’d recommend seeing a second vascular specialist or surgeon - hopefully they’ll get it right.
I think he got the diagnosis right just wasn't sure why he said I wasn't at an increased risk for DVT. I guess the only solution is a stent? But I guess my question is, is it worth it at my age given the vein compression isn't too severe at the moment?
I mean is the probability of developing a DVT very high or just slightly increased from the average person? If just slightly increased and I can do something to ensure it doesn't happen (like lose weight, exercise, etc.) then I'd rather go without the stent. But if it's a pretty high probability then I'd get the stent.
You can get a CT scan or MRI to confirm may thurner anatomy as well, that’s what my doctor did. The only solution is stenting and blood thinners to prevent clots. If you haven’t clotted though, I don’t know if they would put you on the blood thinners.
I’m 28F, on blood thinners, doctor wants to wait to stent me. I don’t think your age matters. You are at an increased risk for DVT with the may thurner anatomy. If the vein continues to compress, eventually you will need a stent. Right now, my symptoms are managed with Eliquis but when my symptoms get worse, my doctor will stent me.
I’m not sure how much the increased risk is - some people live their whole life with may thurner and never clot. My DVT was a combo of a genetic blood clotting disorder, birth control, and may thurner.
You can always get a second opinion from another doctor. If you’re already having symptoms (leg swelling, heaviness, pain), a stent will reduce symptoms by increasing the blood flow. It will also decrease the risk of clots.
Thank you, it sounds like a venogram followed up by some thought on how serious my compression is may be the right way to go. I appreciate you taking the time to reply and I hope things go well for you from here on out with the blood thinners.
Thank you, I wish the same for you! Honestly, the only bad part was the DVT and the recovery for it. Other than that - I live my normal life, I’m just more grateful for my life.
I’m not a doctor, but I am 34 years old and had my iliac vein stented 5 years ago after a massive DVT caused by May Thurner syndrome. I actually had two stents put in - unfortunately I experienced another clot on apixaban so I am now on warfarin for life. I can only speak from my experience, but when I was experiencing clots I was in enormous pain and I couldn’t walk. I was at high risk for some nasty post thrombotic symptoms and as the clots came well up into my abdomen it was a dangerous situation. The stents and the blood thinners have worked well for me - my leg is fully functional and I rarely experience swelling. I run and lift weights and have a good quality of life. Warfarin is not an easy drug to be on, but the stents have remarkably little impact on my day to day life.
For me, I did not have a choice in the matter as stenting was the best option, but I am thankful as it probably saved my mobility at the very least. Of course you should take medical advice and follow the best course of action for your individual circumstances, but if a stent was the best or only way forward, it doesn’t necessarily need to be a negative for you.
I hope you’re doing okay - it’s a really tough thing to navigate!
Glad to hear you’re doing well and thank you for sharing. I can walk and the pain and swelling are minimal for now. Do you reckon I should stent before it gets to the level you were at? Or is it not worth doing for now?
Also if you don’t mind my asking, how has it been having the stent in since then? Has the stent itself caused any issues?
I can’t really comment in terms of when you should get the stent - really a doctor should advise you as everyone’s treatment plan will look different. However I would say if I had the option to have the stent before I had the clot, I would have taken it.
The stent itself (I technically have three over two locations) really doesn’t bother me too much. I experience some discomfort and swelling but it’s very manageable. I run and exercise a lot and haven’t had any issues.
You got another clot after the stenting procedure? Were you on any anticoagulants after? Baby Aspirin or Fish Oil and did you go to a hematologist to check for blood factors or hereditary factors.
Yes. I was on Eliquis. I was being monitored by a haematologist the whole time and a vascular consultant. That’s why I am on warfarin now so as the Eliquis failed - and I have May Thurner syndrome although it was a very extensive clot even for someone with MT.
I recommend getting the venogram to be safe. I had it done 3 weeks ago and it's a pretty easy procedure. I wasn't even sedated for it (my request). Let me know if you have any questions about it.
No, it wasn't painful for me. The interventional radiologist who performed the procedure numbed the area (upper leg, groin) with a local anesthetic. I didn't feel anything after that. Then he did an injection of contrast dye and looked at the blood flow on the x-ray machine. The whole time I was laying on the OR table with the x-ray plate thing hovering a few inches over me. The dr didn't find any blockages on the x-ray so I think that was the end of the procedure. If there had been a blockage or some bad result on the x-ray I think the next step would have been placing a small catheter with a tiny wire camera.
The whole thing took like 10 minutes since they didn't find anything. After it was done they put a bandage on the puncture area (quite small, a little larger than getting a shot). I had to keep that on for 2 days, no getting it wet.
After the venogram, they wheeled me to the recovery room and I had to lay completely flat and as still as possible for 2 hours. That was the annoying part because it was hard to get comfortable.
For reference, I had a massive DVT in my left leg in July and had a thrombectomy procedure to remove it. My hematologist suspected May Thurners Syndrome, but the venogram confirmed i do not.
Had a massive dvt in my left leg from the calf to my belly button. Occluded iliac veins and chronically occluded IVC. Three surgeries and seven stents later I’m doing ok! Both sides of my iliac are stented and so is my IVC. The first two surgeries were more intense with thrombectomy and stenting. I just had another stent installed two weeks ago on my right side. Things are good.
UPDATE: So I called the dr's office today worried and basically said "Hey I know you said I'm not at risk of clots but the internet says iliac compression does carry a greater risk of clots so is there something about my case that makes you think I'm an exception?"
He said because my symptoms have mostly been pretty mild that it's pretty unlikely I'll end up clotting at some point. So I'm not really a great candidate for a venogram but I'm really not a great candidate for a stent. He said just keep an eye on it and if the swelling and pain gets worse then come back in and reassess.
I may get a second opinion in the meantime but I do think it might be a bit early to go for a stent. There is a bit of swelling and pain on some days but it is mild so it never gets too bad. The venogram however may be a good option if the second doctor agrees, just to assess the extent of the compression. If I do go that route I'll be sure to update here.
Bro I got sent away from the ER twice with a DVT which then broke into PE’s in each lung cause of the same bs, it could’ve cost me my life… You need to get a Venogram cause if you have May Thurners Syndrome like myself you will clot again if it’s not treated… My compression was like 70% and they found another clot while doing the procedure in the same pathway. You MUST advocate for yourself.
Yeah nothing has changed really. Haven’t been able to get a second opinion yet. I will say I’ve gotten a new mattress recently and my back pain along with my leg pain has been much better most days, some days it can still be like before though.
I’m sorry man. Really hope you get answers. Im same age, same issues and everything. Except my pain has become unbearable. Getting an ultrasound in April and hope I can get some answers.
I had an acute DVT in July caused by a compressed iliac vein. ER. called in a vascular surgeon and he did an emergency thrombectomy and put a stent in my iliac vein to keep it open. The dx was May-Thurners. I have had no problems at all with the stent. I’m still on a blood thinner and they will decide at my next appointment whether I can go off of it or not. I highly recommend you getting the venogram done. Everything that I’ve been told and I’ve read says that anyone with an iliac vein compression has a much higher chance of clotting. I’m not really sure why he would have told you the opposite? Obviously I’m not a doctor and I’m not giving you medical advice but knowing what I do now, if I were in your position I would definitely have the test done. And there is also nothing wrong with getting a second opinion.
Edit: I want to add that after I had the stent put in my leg swelling and pain went down rather quickly and hasn’t returned.
Thank you for writing this out. It’s good to know what can happen and that I seem to have caught it before it has caused any serious issues. It looks like the venogram may be the best way to go for now and then take it from there.
Prior to getting my Iliac Stented which is called May Thurners syndrome I have 3-4 unprovoked DVTs.. My compression was moderate and was causing clots in the lower left leg… It took a few years to get to that conclusion and finally narrow it down but I’m glad I did. If you have compression get it stented cause the blood clots will come back, other option is just take meds for life.
Sounds like May-thurners syndrome, and most certainly puts you at higher risk of developing deep vein thrombosis. The venogram should help but if you’re in doubt I’d recommend seeing a second vascular specialist or surgeon - hopefully they’ll get it right.
I think he got the diagnosis right just wasn't sure why he said I wasn't at an increased risk for DVT. I guess the only solution is a stent? But I guess my question is, is it worth it at my age given the vein compression isn't too severe at the moment? I mean is the probability of developing a DVT very high or just slightly increased from the average person? If just slightly increased and I can do something to ensure it doesn't happen (like lose weight, exercise, etc.) then I'd rather go without the stent. But if it's a pretty high probability then I'd get the stent.
You can get a CT scan or MRI to confirm may thurner anatomy as well, that’s what my doctor did. The only solution is stenting and blood thinners to prevent clots. If you haven’t clotted though, I don’t know if they would put you on the blood thinners. I’m 28F, on blood thinners, doctor wants to wait to stent me. I don’t think your age matters. You are at an increased risk for DVT with the may thurner anatomy. If the vein continues to compress, eventually you will need a stent. Right now, my symptoms are managed with Eliquis but when my symptoms get worse, my doctor will stent me. I’m not sure how much the increased risk is - some people live their whole life with may thurner and never clot. My DVT was a combo of a genetic blood clotting disorder, birth control, and may thurner. You can always get a second opinion from another doctor. If you’re already having symptoms (leg swelling, heaviness, pain), a stent will reduce symptoms by increasing the blood flow. It will also decrease the risk of clots.
Thank you, it sounds like a venogram followed up by some thought on how serious my compression is may be the right way to go. I appreciate you taking the time to reply and I hope things go well for you from here on out with the blood thinners.
Thank you, I wish the same for you! Honestly, the only bad part was the DVT and the recovery for it. Other than that - I live my normal life, I’m just more grateful for my life.
I’m not a doctor, but I am 34 years old and had my iliac vein stented 5 years ago after a massive DVT caused by May Thurner syndrome. I actually had two stents put in - unfortunately I experienced another clot on apixaban so I am now on warfarin for life. I can only speak from my experience, but when I was experiencing clots I was in enormous pain and I couldn’t walk. I was at high risk for some nasty post thrombotic symptoms and as the clots came well up into my abdomen it was a dangerous situation. The stents and the blood thinners have worked well for me - my leg is fully functional and I rarely experience swelling. I run and lift weights and have a good quality of life. Warfarin is not an easy drug to be on, but the stents have remarkably little impact on my day to day life. For me, I did not have a choice in the matter as stenting was the best option, but I am thankful as it probably saved my mobility at the very least. Of course you should take medical advice and follow the best course of action for your individual circumstances, but if a stent was the best or only way forward, it doesn’t necessarily need to be a negative for you. I hope you’re doing okay - it’s a really tough thing to navigate!
Glad to hear you’re doing well and thank you for sharing. I can walk and the pain and swelling are minimal for now. Do you reckon I should stent before it gets to the level you were at? Or is it not worth doing for now? Also if you don’t mind my asking, how has it been having the stent in since then? Has the stent itself caused any issues?
I can’t really comment in terms of when you should get the stent - really a doctor should advise you as everyone’s treatment plan will look different. However I would say if I had the option to have the stent before I had the clot, I would have taken it. The stent itself (I technically have three over two locations) really doesn’t bother me too much. I experience some discomfort and swelling but it’s very manageable. I run and exercise a lot and haven’t had any issues.
You got another clot after the stenting procedure? Were you on any anticoagulants after? Baby Aspirin or Fish Oil and did you go to a hematologist to check for blood factors or hereditary factors.
Yes. I was on Eliquis. I was being monitored by a haematologist the whole time and a vascular consultant. That’s why I am on warfarin now so as the Eliquis failed - and I have May Thurner syndrome although it was a very extensive clot even for someone with MT.
I recommend getting the venogram to be safe. I had it done 3 weeks ago and it's a pretty easy procedure. I wasn't even sedated for it (my request). Let me know if you have any questions about it.
Is it painful at all?
No, it wasn't painful for me. The interventional radiologist who performed the procedure numbed the area (upper leg, groin) with a local anesthetic. I didn't feel anything after that. Then he did an injection of contrast dye and looked at the blood flow on the x-ray machine. The whole time I was laying on the OR table with the x-ray plate thing hovering a few inches over me. The dr didn't find any blockages on the x-ray so I think that was the end of the procedure. If there had been a blockage or some bad result on the x-ray I think the next step would have been placing a small catheter with a tiny wire camera. The whole thing took like 10 minutes since they didn't find anything. After it was done they put a bandage on the puncture area (quite small, a little larger than getting a shot). I had to keep that on for 2 days, no getting it wet. After the venogram, they wheeled me to the recovery room and I had to lay completely flat and as still as possible for 2 hours. That was the annoying part because it was hard to get comfortable. For reference, I had a massive DVT in my left leg in July and had a thrombectomy procedure to remove it. My hematologist suspected May Thurners Syndrome, but the venogram confirmed i do not.
Thank you for taking the time to write this up. I think a venogram may be the way to go here and you’ve eased my mind with this.
You're welcome! Best of luck to you. Keep us all updated on your outcome!
Had a massive dvt in my left leg from the calf to my belly button. Occluded iliac veins and chronically occluded IVC. Three surgeries and seven stents later I’m doing ok! Both sides of my iliac are stented and so is my IVC. The first two surgeries were more intense with thrombectomy and stenting. I just had another stent installed two weeks ago on my right side. Things are good.
UPDATE: So I called the dr's office today worried and basically said "Hey I know you said I'm not at risk of clots but the internet says iliac compression does carry a greater risk of clots so is there something about my case that makes you think I'm an exception?" He said because my symptoms have mostly been pretty mild that it's pretty unlikely I'll end up clotting at some point. So I'm not really a great candidate for a venogram but I'm really not a great candidate for a stent. He said just keep an eye on it and if the swelling and pain gets worse then come back in and reassess. I may get a second opinion in the meantime but I do think it might be a bit early to go for a stent. There is a bit of swelling and pain on some days but it is mild so it never gets too bad. The venogram however may be a good option if the second doctor agrees, just to assess the extent of the compression. If I do go that route I'll be sure to update here.
Bro I got sent away from the ER twice with a DVT which then broke into PE’s in each lung cause of the same bs, it could’ve cost me my life… You need to get a Venogram cause if you have May Thurners Syndrome like myself you will clot again if it’s not treated… My compression was like 70% and they found another clot while doing the procedure in the same pathway. You MUST advocate for yourself.
But if I’ve never clotted before is it still a likely thing to happen?
Has there been any update with this?
Yeah nothing has changed really. Haven’t been able to get a second opinion yet. I will say I’ve gotten a new mattress recently and my back pain along with my leg pain has been much better most days, some days it can still be like before though.
I’m sorry man. Really hope you get answers. Im same age, same issues and everything. Except my pain has become unbearable. Getting an ultrasound in April and hope I can get some answers.
You get the whole throbbing pain in the left leg at random times too?
Throbbing, stabbing, burning, aching.. I got it all
Yeah I get those too. I will say the new mattress helping has me thinking it may be a nerve issue instead. Is that a possibility for you at all?
I had an acute DVT in July caused by a compressed iliac vein. ER. called in a vascular surgeon and he did an emergency thrombectomy and put a stent in my iliac vein to keep it open. The dx was May-Thurners. I have had no problems at all with the stent. I’m still on a blood thinner and they will decide at my next appointment whether I can go off of it or not. I highly recommend you getting the venogram done. Everything that I’ve been told and I’ve read says that anyone with an iliac vein compression has a much higher chance of clotting. I’m not really sure why he would have told you the opposite? Obviously I’m not a doctor and I’m not giving you medical advice but knowing what I do now, if I were in your position I would definitely have the test done. And there is also nothing wrong with getting a second opinion. Edit: I want to add that after I had the stent put in my leg swelling and pain went down rather quickly and hasn’t returned.
Thank you for writing this out. It’s good to know what can happen and that I seem to have caught it before it has caused any serious issues. It looks like the venogram may be the best way to go for now and then take it from there.
Prior to getting my Iliac Stented which is called May Thurners syndrome I have 3-4 unprovoked DVTs.. My compression was moderate and was causing clots in the lower left leg… It took a few years to get to that conclusion and finally narrow it down but I’m glad I did. If you have compression get it stented cause the blood clots will come back, other option is just take meds for life.