May-Thurner syndrome (MTS)

Posted by ntgerh64 @ntgerh64, Feb 28, 2018

Joined today. Wondering if anyone in this discussion group has been diagnosed with May Thurner Syndrome and have varicose veins along with acute and chronic venous stasis? If so, how are you dealing with the venous stasis in your legs? I’m struggling with this and hope someone else may be experiencing same or similar issues and will share what they are doing or experiencing.

Welcome to Connect, @ntgerh64,

You may notice that I changed the title of your message so that it better reflects your concerns, and it might also make it easier for other members to connect and share their experiences with you.

I'd like to introduce you to @marlene64 who has shared her journey with Livedoid Vasculopathy and May-Thurner syndrome. You may wish to read the conversations in this discussion:
https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/

I'd also like to tag @zenk @gonefishinmt @patientrea @prairiesmoke @aimeenc @mlemieux, and invite them to join this discussion with their insights.

Another discussion that might interest you is, "Swelling and pain in my left ankle and lower leg – venous insufficiency?" https://connect.mayoclinic.org/discussion/i-have-had-swelling-and-pain-in-my-left-ankle-and-lower/, where @gailg writes about venous insufficiency, and may be able to offer some suggestion, as well.

@ntgerh64, how have you been managing the swelling and pain thus far? Do you use compression stockings?

REPLY
@kanaazpereira

Welcome to Connect, @ntgerh64,

You may notice that I changed the title of your message so that it better reflects your concerns, and it might also make it easier for other members to connect and share their experiences with you.

I'd like to introduce you to @marlene64 who has shared her journey with Livedoid Vasculopathy and May-Thurner syndrome. You may wish to read the conversations in this discussion:
https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/

I'd also like to tag @zenk @gonefishinmt @patientrea @prairiesmoke @aimeenc @mlemieux, and invite them to join this discussion with their insights.

Another discussion that might interest you is, "Swelling and pain in my left ankle and lower leg – venous insufficiency?" https://connect.mayoclinic.org/discussion/i-have-had-swelling-and-pain-in-my-left-ankle-and-lower/, where @gailg writes about venous insufficiency, and may be able to offer some suggestion, as well.

@ntgerh64, how have you been managing the swelling and pain thus far? Do you use compression stockings?

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Have worn compression hose since my early 20’s. I’m now in my 70’s. It helps with leg swelling. This past 6 months though I developed acute venous stasis over the chronic venous stasis which has always been present but is getting worse. With this acute episode which I can’t get under control, I’ve tried different antibiotics both pill and ointment. Seems like it’s going to go away then flares up again. Compression hose do help but not completely.

REPLY
@kanaazpereira

Welcome to Connect, @ntgerh64,

You may notice that I changed the title of your message so that it better reflects your concerns, and it might also make it easier for other members to connect and share their experiences with you.

I'd like to introduce you to @marlene64 who has shared her journey with Livedoid Vasculopathy and May-Thurner syndrome. You may wish to read the conversations in this discussion:
https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/

I'd also like to tag @zenk @gonefishinmt @patientrea @prairiesmoke @aimeenc @mlemieux, and invite them to join this discussion with their insights.

Another discussion that might interest you is, "Swelling and pain in my left ankle and lower leg – venous insufficiency?" https://connect.mayoclinic.org/discussion/i-have-had-swelling-and-pain-in-my-left-ankle-and-lower/, where @gailg writes about venous insufficiency, and may be able to offer some suggestion, as well.

@ntgerh64, how have you been managing the swelling and pain thus far? Do you use compression stockings?

Jump to this post

Hi, In May of this year I had severe left leg swelling. I went to my local hospital and found I had a massive dvt. They admitted me and put me on heperin. Two days later they did a Ekos System procedure where they removed the blood clots which extended into my abdomen. At this time they discovered the May-Thurner syndrome and inserted two stents. It was also determined that I had Factor V Leiden. It is now almost October and the swelling has greately reduced. I am wearing compression stockings and take warfarin on a daily basis. The left leg is numb to some degreee but I am able to walk, but sometimes a lot of walking tends to make my leg sore. How long can I expect the numbness and pain? I am 63 years old and have never had a blood clot before (dvt) before.

REPLY
@kanaazpereira

Welcome to Connect, @ntgerh64,

You may notice that I changed the title of your message so that it better reflects your concerns, and it might also make it easier for other members to connect and share their experiences with you.

I'd like to introduce you to @marlene64 who has shared her journey with Livedoid Vasculopathy and May-Thurner syndrome. You may wish to read the conversations in this discussion:
https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/

I'd also like to tag @zenk @gonefishinmt @patientrea @prairiesmoke @aimeenc @mlemieux, and invite them to join this discussion with their insights.

Another discussion that might interest you is, "Swelling and pain in my left ankle and lower leg – venous insufficiency?" https://connect.mayoclinic.org/discussion/i-have-had-swelling-and-pain-in-my-left-ankle-and-lower/, where @gailg writes about venous insufficiency, and may be able to offer some suggestion, as well.

@ntgerh64, how have you been managing the swelling and pain thus far? Do you use compression stockings?

Jump to this post

I wear compression stockings every day. I take a tylenol for pain. Mostly I tough it out.

REPLY
@ddbnewmexico

I am wondering how to go about having Mayo Clinic can give me a second opinion on my possibly having May Thurner Syndrome. Based on my history of blood clots in my left leg, beginning with my first pregnancy at 23, he suggested we should check. The MRI I had did not rule out May Thurner. He explained that next they'll insert a probe up my left leg to do an ultrasound and an xray to see if my right iliac artery is pressing on my left iliac vein. If so, he said the treatment is to have a stent put in the vein. BUT he said they may not have the correct size of stent, and that I may have to come back after the diagnosis to have the stent put in. That makes me think of a mechanic working with an incomplete set of tools, and I don't know what to do next, but I don't want that! Is there an online review? Or do I need to get an appointment?

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@ddbnewmexico I strongly suggest you get an appointment at Mayo. Go to mayoclinic.org where you will be able to get phone numbers for whichever Clinic is closest to where you live. If you’re not sure which department to get an appointment with, choose general internal medicine. There you will meet with someone that will send you to the right doctors for your specific needs. This will help get you on the right road to recovery.

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@ddbnewmexico

I am wondering how to go about having Mayo Clinic can give me a second opinion on my possibly having May Thurner Syndrome. Based on my history of blood clots in my left leg, beginning with my first pregnancy at 23, he suggested we should check. The MRI I had did not rule out May Thurner. He explained that next they'll insert a probe up my left leg to do an ultrasound and an xray to see if my right iliac artery is pressing on my left iliac vein. If so, he said the treatment is to have a stent put in the vein. BUT he said they may not have the correct size of stent, and that I may have to come back after the diagnosis to have the stent put in. That makes me think of a mechanic working with an incomplete set of tools, and I don't know what to do next, but I don't want that! Is there an online review? Or do I need to get an appointment?

Jump to this post

I'm sorry for your health issues. My wife and I had a rough start with our first born. She was hospitalized at the end of her pregnancy for a blood clot in her left thigh. After that she had several tests done. About 10years ago doctors at Mayo found that she had Factor V Leiden(a blood clotting disorder) since that she has had to stay on blood thinners and constantly have her blood checked. I hope this may help you.

REPLY

I am wondering how to go about having Mayo Clinic can give me a second opinion on my possibly having May Thurner Syndrome. Based on my history of blood clots in my left leg, beginning with my first pregnancy at 23, he suggested we should check. The MRI I had did not rule out May Thurner. He explained that next they'll insert a probe up my left leg to do an ultrasound and an xray to see if my right iliac artery is pressing on my left iliac vein. If so, he said the treatment is to have a stent put in the vein. BUT he said they may not have the correct size of stent, and that I may have to come back after the diagnosis to have the stent put in. That makes me think of a mechanic working with an incomplete set of tools, and I don't know what to do next, but I don't want that! Is there an online review? Or do I need to get an appointment?

REPLY

Hi @ddbnewmexico,

I sincerely apologize for this delay in replying! If you would still like to get an opinion from Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments
Representatives will ask questions to help direct you to the best specialist, either at Mayo or closer to home.

You may also notice that I moved your discussion and combined it with this existing discussion as I thought it would be beneficial for you to be introduced to other members who’ve talked about MTS.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

How are you doing, @ddbnewmexico? May I ask if you would share any updates since your first post?

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