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?

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@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?

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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.

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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, If you would 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://mayocl.in/1mtmR63
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?

REPLY
@kanaazpereira

Hi @ddbnewmexico, If you would 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://mayocl.in/1mtmR63
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?

Jump to this post

Hi, my name is Maddie Schneider from Columbus, Ohio. I was diagnosis with May Thurner Syndrome in January 2015 after going through a prolonged issue with heart disease. I was diagnosed with Cardiomyopathy in 2005 along with uterine cancer and Thrombosis.

I found a wonderful physician at the Cleveland Clinic, Dr.Daniel Clair who was spot on with this type of disease. Unfortunately, he moved to South Carolina to practice but if you want to find the answers to your health issues concerning this disease this is the medical clinic you should schedule an appointment for a first or second opinion. All I did was call the office of vascular at the clinic and scheduled my appointment, for some patients they will need to get a referral from their primary care. As soon as they receive the referral the office calls immediately to schedule.

I did have the stents placed in the right(1) and left(2) leg in addition to the pelvic area (1). Stayed over one night and returned home the next day. The swelling did reduce over a long period of time. It takes a lot of research to find the right physician who treats this disease and has a lot of experience and knowledge concerning this disease. But it's well worth your time! If you don't have a Cleveland Clinic, Mayo Clinic also has experienced physicians who deal with this disease on a regular base.

You can't beat the Cleveland Clinic. I am scheduled to discuss the next step to put an end to the edema and the shading of my lower extremities. It's very difficult for me to walk, to the point I need a walker and had to set aside the compression stockings because it only makes my issues worst.

I am not able to stand or walk for an extended amount of time, I get cramping in the lower extremities like I have pulled a ligament but what it is the compression of the left iliac vein with the right. My next move is surgery to lift and redirect my blood system to help eliminate these issues to make my heart function properly to extend my quality of life. It's well worth the time to stay on top of this medical condition and find the right doctor. Pick up the phone or get online to the Mayo Clinic, I am glad I did! With Gods Warm Blessing, Good Luck, Maddie

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?

Jump to this post

Hi, my name is Maddie Schneider, I posted an article online a few minutes ago about May Thurner Syndrome. Please read below. Your doctor is wrong when he said you don't have May Thurner Syndrome. May Thurner Syndrome is the compression of your right and left iliac veins. Women have this disease more than men. It can happen after one or two births. Please go to the Mayo Clinic Website and type in May Thurner Syndrome. It will give you a complete explanation of this disease and what steps you need to take. I strongly urge you to contact the Cleveland Clinic. I drive four hours to get my location in Cleveland Ohio. Call the Vascular office, if you need a referral call your Primary Care Physician and have them send one over to their office. Prior to calling your Primary Care Physician asked the Vascular Office their phone number and fax and the person you should direct the referral. Your Primary Care Physician will ask for that information if you don't already know.

If you have a computer get online and ask the Cleveland Clinic who treats May Thurner Syndrome and read, read their accomplishments with this disease. Then select the physician you want to have a consultation concerning this disease. I went to Dr. Daniel Clair but he recently moved to South Carolina. Nevertheless, they can put you to the right physician. In fact, ask the Vascular Office who they would highly recommend if they had this issue. Another clinic is the Mayo Clinic. They are all over the United States You won't go wrong going to the Cleveland Clinic. Great team of physicians. With Gods Warm Blessings, Good Luck, Maddie

REPLY

Thank you so much for sharing your insights, @maddie3211.
Connect is an open community for everyone, regardless of where people receive treatment, and it is important that people know their options and can make choices.

However, because @ddbnewmexico wants information about seeking a second opinion at Mayo Clinic, I’d also like to mention that Mayo Clinic's Department of Cardiovascular Medicine is one of the largest and most comprehensive heart practices in the world. The cardiovascular team at all 3 Mayo Clinic campuses collaborates with experts in many specialties–which means that you're not just getting one opinion. Highly specialized experts are working together for you, and what might take weeks or months to accomplish elsewhere can typically be done in a matter of days at Mayo Clinic.

@maddie3211, may I ask if you would share more details about yourself? Did you have any symptoms prior to stent placement? I’ve also read that in-stent restonisis can often be a problem; do you suspect this could be the cause of the cramping and discomfort you are experiencing? I look forward to getting to know you better.

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