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I was 25 years old Jessie Photoin January 2011, and I knew nothing about blood clots.  Several months prior to that January I felt a mild, irritating pain in my right side.  It occurred mainly when I was laying down too long, hiccupping, or when my breathing was heavy.

I went to my doctor; she ordered an ultrasound that found nothing.  I knew something was wrong, but my doctor didn’t push me to do more, so I didn’t worry.  In fact, she told me it was probably heart burn and to take heart burn medicine. Then in January of 2011, my life changed.  A minor car accident prompted me to get a new family doctor and he was very concerned about the pain in my side, which had grown worse. He ordered an MRI; however, four days before the MRI, on Monday, my left leg began to hurt.  I had actually limped my way through my tutoring job on Tuesday. As in many other stories I have read, I thought I had pulled a muscle. By Wednesday, my leg was so swollen, sore, and red that I called the doctor.  He told me to go straight to the E.R. (Emergency Room)

In the ER, I received the news: I had a massive blood clot in my left leg that stretched from my thigh to just below my knee and a clot in my lung on the right side. The clot in my leg was so large that I was taken into surgery the next morning to have it removed.  I began to cry.  I only knew of one other person to have a blood clot, my best friend’s grandmother, and she had died from it.  I was incredibly scared.

The cardiologist doing the surgery would become a familiar face over the next few years.  He spent three days entering my veins from behind the knee to remove the clot.  During this time he also found multiple clots in my abdomen, which he also removed.  I spent three excruciating days lying flat on my back, unable to move for fear the clots would shift and go to my lungs or heart.  After five days in the hospital, I was released on warfarin.

After the surgery I suffered from post-thrombotic syndrome (PTS). (PTS results from the damage blood clots can cause to veins, resulting in chronic symptoms include swelling, pain, and discoloration of the skin.) My left leg never totally healed and would swell and hurt constantly.  I wore a compression stocking at all times.  My doctor kept hoping that I would heal especially with how young I was, but I hit a plateau in healing.  I also dealt with the fact that my cardiologist and hematologist couldn’t pinpoint why I had this blood clot.  Everyone assumed that my birth control was a factor, but such a large blood clot had to have been caused by another underlying condition.  I was tested for everything, but everything came back negative.  Things became more confusing when my dad got a blood clot just a few months after mine.  He was hospitalized and a test for Factor V Leiden came back positive.  I was tested twice for this genetic blood disorder and both times I was negative.  (My dad was later released from the hospital and is doing great, though as a pilot he must be very careful and give himself a Lovenox injection before flights.)

A year went by and I was emotionally distraught because my healing progress stalled.  I was now 27 years old, and my leg hurt so much that I couldn’t run, jump, or be physically active for any length of time.  I began to wonder how this would affect me when I became a mother, since my husband and I were beginning to discuss having children.  Would I be able to keep up with my kids?  Would I be able to carry my kids?

Over a year later, my doctor decided I was not going to heal further and he wanted to explore another avenue.  He told me about May-Thurner Syndrome (MTS), a rare condition that strikes women in their 20’s to 40’s. MTS is where a vein in the leg is compressed by an artery in the leg, which increases the risk of a DVT (deep vein thrombosis or blood clot) in the left leg.  The doctor said the only way to know definitively if I had May-Thurner Syndrome was to do exploratory surgery. I went through with the surgery November of 2012.  The diagnosis was confirmed and a stent (tube that keeps blood vessels open) was placed in my abdomen.  I immediately felt blood flow in my leg that I hadn’t felt in a long time.  A few months later, my left leg was not completely healed but it had greatly improved.

This experience taught me to advocate for myself.  I know when something is wrong with my body. If I had pushed my first doctor to do more, I may have avoided much of what I went through.  Having the right doctors makes all the difference in the world.  Surround yourself with a knowledgeable team of people who are willing to listen to your concerns, and who are willing to do whatever it takes to solve your medical issues.

Today, my leg is still not perfect, as it will hurt when I am very active, and change colors to red and purple. I wear my compression stocking every day to relieve the discomfort.  There are little things I have to be careful of – like I can’t sit with my legs dangling (high bar stools are the worst) and I can’t jump, or run for long before hurting.  However, I have been told that my symptoms are pretty mild compared to others with post-thrombotic syndrome

This has not stopped me from anything though.  I am an avid skier and traveler.  My husband and I took a two-week trip to Germany last summer during which I hiked in the Swiss Alps!  I also have a trip planned for San Juan coming up in March during which I will be zip-lining through the rain forest! Another development is that my husband and I took this as a wake-up call to get healthy.  I lost over 30 pounds and he lost over 40.  My main concern at this point, though, is that I want to start a family in the near future and there is not a lot of research on May-Thurner Syndrome, stents, and pregnancy.  I would be happy to update my story in the coming years as I start down that path.

I am 28 years old and I survived life-altering blood clots.

Take Home Messages

  • Blood clots happen to young people in their 20’s who are seemingly healthy.
  • Blood clots are sometimes misdiagnosed as something else as in this story, heartburn
  • A DVT (blood clot in the leg or arm) often feels like a pulled muscle.
  • May-Thurner Syndrome is a rare condition that most people don’t know they have until they get a blood clot.
  • MTS is more commonly diagnosed in young women. It is 3 times more likely to occur in women as men. But, it does occur in men too.
  • May-Thurner is treatable with stents.
  • Listen to your body and when you think something is wrong, advocate for yourself.
  • Make sure you have a knowledgeable health care team that is willing to work with you.
  • Blood clots are a life-altering experience.
  • There is life after blood clots.
Author: admin

41 Responses to "Jessica Schafer’s May-Thurner Syndrome & Blood Clot Story"

  1. Liz Kuhns
    Liz Kuhns Posted on January 10, 2014 at 12:57 am

    Hi Jessica,
    I can so relate to your story! I also have May Thurner Syndrome and wanted to make sure you knew about the May-Thurner Syndrome Resource Network on Google Groups and Facebook. It is a great support for those of us with MTS. Best wishes for good health!
    Liz

    • Chrissy
      Chrissy Posted on January 10, 2014 at 4:40 am

      Hi Jessica!! I also suffer from MTS. I had a stent placed as well. My next concern is pregnancy as well. I have searched for multiple things regarding it and I really can’t find much. Thank you Liz for the facebook group! I would love to keep in touch and maybe see what you have heard from your doctors regarding future planning. I also experience a very similar story.

  2. Jessica
    Jessica Posted on January 13, 2014 at 3:37 pm

    Thanks Liz for the infor on the Network! I just joined and I think it will be very helpful!! Chrissy, I would love to keep in touch and share information about MTS and pregnancy. I was thinking about keeping a journal of everything that I go through, decisions I make and then publishing it somewhere. Maybe here or other websites. There is so little information out there, I’m hoping I can help by making information about my experience available.

    • Mariana Rivera
      Mariana Rivera Posted on June 18, 2016 at 3:31 pm

      Hi Jessica,
      I am going through the same exact thing and all test are coming back negative. I continue with the same symptoms. On Thursday my left leg along with my ankles swelled up out of no where once again. It is painful to deal with. Can you recommend what doctors I should see. I’ve been to a podiatrist, orthopedic surgeon, vascular surgeon and no avail. Please help.

  3. Liz
    Liz Posted on January 16, 2014 at 4:30 am

    Hi Jessica,

    Your story is so similar to mine! I wish that was a good thing but it is comforting to know that other people can relate and are living wonderful lives anyway : ) I have May-Thurner Syndrome as well and got my first dvt at 24 in 2010. I also have post-thrombotic syndrome and wear compression stockings daily. I can no longer run which use to be such a source of joy for me. I understand your pain. I just was diagnosed last month with a second dvt in my pelvis. I had been off Coumadin for about a year and a half (taking daily low dose aspirin only) but apparently it wasn’t enough. All you ladies with May-Thurner may want to consider talking to your doctors about getting a yearly ultrasound if you aren’t doing that already. I was supposed to get a yearly one but put it off due to my busy schedule and unlike my initial dvt which was much like Jessica’s experience, I didn’t really have any new symptoms with he second dvt. I don’t say this to scare you but to make sure that you take your condition seriously and stay on top of your health!! Best of luck to all of you going through this. It definitely is not easy.

    Take care,

    Liz

  4. Sherry
    Sherry Posted on May 16, 2014 at 12:13 am

    I have just found this website and I have not been diagnosed with May-Thumer, but my story is identical to yours. My leg has gotten worse recently due to having blood clots in my left leg with no reason why. It gets purple and swells, worsening over the past 5 years. It is good to know that there is a name for what I haven even though there is no cure. I am on Jantoven for the rest of my life. Whatever don’t try the new Xeralto, the side of effect of this blood thinner is swelling of the lower extremities. It tried it, until my symptoms worsened and they told me of this side effect.

  5. Sharon Warner
    Sharon Warner Posted on September 18, 2014 at 6:13 pm

    I too have MTS. I clotted from my iliac vein to my toes in my left leg. I threw a massive clot to my lung (aka Pulmonary embolis) then showered clot. I spent a week in ICU and ended up getting 2 Cordis Smart Stents in my left iliac vein. I am a vascular surgical assistant in the operating room. I was blessed to work with an aggressive vascular surgeon. Most cardiologist and heart surgeons will spend too much time in the “wait and see” mode and that is when damage to the valves in your veins occur. I agree with some of the other posts….you have too be your own advocate. Push to get the care you need. Look for a BOARD CERTIFIED VASCULAR SURGEON. They specialize in peripheral vascular disease.

  6. Tammt
    Tammt Posted on October 21, 2014 at 11:47 pm

    Hi Jessica,

    I am 49 and just today went to the dr. For my left leg. I have had swelling in this leg since I was about 25 but my own dr just seemed to say it was from standing on my feet and no big deal. At 19 I was pregnant for my first child, about 8 months into my pregnancy my left leg hurt so bad and was all swelled up, I went to er and was hospitalized for about 10 days with blood clots, they gave me Iv’s to dissolve the clots, I went home and 2 days later was righty back in hospital. This time I had to learn to give myself shots of heparin in my stomach, all went well I delivered a healthy baby boy and never had any clots or problems again. Since then I’ve had two more children and about three months along I started shots again to prevent this from happening again . My leg was always a little swollen but. Never prevented me from doing what I wanted to do. Just lately is started to ache and swell more. But as far as a pregnancy I wish you all the best and you can do this

  7. celeste
    celeste Posted on December 6, 2014 at 7:55 am

    Hi Jessica, our stories are a lot alike. I am currently in the SICU for having a stent put in for MTS. They found a 12 inch blockage even though I have been on Coumadin for years. I finally found a doctor who listened to me. I still have PTS but I can’t wait to feel some relief. It has been 10 years for me. Have a great day.

  8. Jessica Schafer
    Jessica Schafer Posted on December 9, 2014 at 7:32 pm

    I haven’t been on here in awhile but I see that there are more comments! Update: It’s been almost a year since I wrote this post and I still have post-thrombotic syndrome. I wear my compression stocking everyday. However, I did zip-line through the rainforests of Puerto Rico and even rappelled down a 70 foot waterfall! I went to Costa Rica over the summer in which I hiked up a volcano and went white water rafting. My leg will throb at night after the activity, but I don’t let it stop me. My husband and I do not have kids yet but I have the green light from all my doctors to get pregnant whenever I am ready.

    For those of you who think you may have MTS or who do have MTS you should definitely join the MTS Resource Network. Thanks to Liz’s suggestions, I joined and have become so much more informed about MTS and blood clots through the wonderful people in the group. I wish everyone the best of luck and remember to be your own advocate!!! If you think you have a clot and your doctor doesn’t take you seriously, see another doctor! I hope that everyone finds the healing that they need!

  9. TamI Burris
    TamI Burris Posted on January 13, 2015 at 6:14 pm

    I too have recently been diagnosed with May Thurner syndrome. I am 54, a little over weight, Otherwise healthy. I woke up and thought what I had was a pulled muscle. As the day progressed it hurt further and further down my left leg. At 3 p.m. I noticed the discoloration and the swelling in my leg, so headed to the ER. I was quickly diagnosed with May Thurner syndrome after an ultrasound. My blood clot went from my belly button to my ankle 100 percent blocked. I had surgery the following morning where are they cleaned 70% of the blood clot. During that procedure the doctor nicked an artery. The next morning after being in excruciating pain, they cleared the other 30 percent. At this time they put in the stent and then rushed me to emergency surgery, where they fixed the artery. I ended up having compartmental syndrome so I laid in ICU with an open wound for 4 days. I feel that I walked into the hospital with what I thought was a torn muscle. 9 days later I rolled out of the hospital taking 9 pills a day, two injections in my stomach a day and having my blood tested every three days. This has been a crazy ride for me. Of course still under doctors care but now I’m also being treated for nerve damage on my left foot because of the damage to the artery. I’ve always felt relatively young for my age, however I will say I feel like I have aged 10 years during this whole thing.

    • Rose
      Rose Posted on February 1, 2015 at 4:27 am

      I wish I had known about a website like this when I went through this a year ago. It started January 14, 2014 when I found it impossible to run more than a quarter mile when I was used to running 3 miles 3 times a week. The doctor wanted to put me on anxiety medicine when nothing showed to be the problem. Two weeks later, I started with pain in my left calf thinking I pulled a muscle. By morning, the pain was going up and my noon, I had to drag my leg. The ER doctor said I was very lucky to be alive before putting me on blood thinners for blood clots in all lobes of my lungs and a clot in my leg which was hung up in my pelvis area and said it was from the years of birth control pills I took.. Six weeks later, to the day, I had a small pain there again, went back to the ER to be sent directly to surgery where 5 stents were placed in my pelvis area to my belly button. Doctors told me it was May-Thurner Syndrome and I’d be on blood thinners the rest of my life. I was only 53 and was not about to quit doing everything I enjoyed. I did return back to running a couple months later and doing great at it. Life has changed and you should never take it for granted. You MUST listen to your body and get that second opinion when necessary! Good luck to you all!

  10. Christopher Jackson
    Christopher Jackson Posted on February 22, 2015 at 1:38 am

    I can relate to everyone, I also have been diagnosed with MTS, my story started while in the Army. I was training at the National Training Center for deployment preparation. My leg swelled and was discolored and very painful. I was sent to the hospital where I was treated for several days then released. My doctor thought everything was fine…until I was in Iraq and it happened again. I now take warfarin everyday for the rest of my life and have my PT INR checked every 2 weeks.

  11. Els Adriaens
    Els Adriaens Posted on February 23, 2015 at 5:25 pm

    hi, i have MTS and pregnant for the moment. For nox everything is going well, I take Asaflow and in the near month i will have to take Clexane. Injections. I am wearing stockings all day long. Have a great day!

  12. Jessica Schafer
    Jessica Schafer Posted on March 31, 2015 at 6:41 pm

    So many responses since I last looked at my story! I hope that each and every one of you recovers well from your procedures and can resume as normal of a life as possible. I just thought I would add an update to this story. I am pregnant! Yay! I am 20 weeks along and I know that I am having a little girl. I am taking Heparin injections twice per day but otherwise my pregnancy has been very normal thus far and very healthy. I have done 7 ultrasounds in the past 20 weeks (another is scheduled for today) and my doctor said he is looking for clots and blood in the placenta as a pre-caution. All the appointments are annoying, but on the positive side I get to see my baby girl a lot! I wish everyone the best of luck as they go forward after an MTS diagnosis! (BTW Christopher – it is very rare for a guy to have MTS, if you have questions you should join the MTS network as I know there are several guys in that group who answer each other’s questions)

  13. Candace Rhodes
    Candace Rhodes Posted on April 1, 2015 at 12:38 am

    Thank you all for sharing your stories. My 14 year old grand daughter just spent two weeks in intensive care at UCSF Benioff Children’s Hospital. She was so lucky to have a doctor that recognized the symptoms of May-Thurner Syndrome from her xray. I will let her tell her own story when she is ready but it is so good to know that she has support. Congratulations Jessica!

  14. Hannah
    Hannah Posted on April 5, 2015 at 8:46 pm

    Hi,
    I’ 19 so it looks like I’m the youngest to comment here. I went into hospital 4 weeks ago and was diagnosed with MTS during the thrombolysis procedure. They have put a stent in my pelvis and have said that this will cure MTS as it prevents the vein from collapsing again. I am also on Xarelto and have just come out of hospital today after being admitted for ankle foot and calf swelling with no answer as to why it happened but after reading Sherry’s comment I now am going to follow up with this. I am glad that Jessica is managing to have a child as I was quite worried about that myself!
    Getting treatment for your clot straight away is so important if you have any of the symptoms make sure you push your Dr and if he won’t listen go to A+E/ER straight away! The quicker you get treatment the better recovery you will have, until I got this swelling I had almost completely recovered in only 4 weeks and my clot has all gone.

  15. normala
    normala Posted on April 22, 2015 at 7:39 am

    Hi everyone.

    Im 49 and just had stenting inplanted last week for MTS i had on both legs. Right after the surgery and up till now I am suffering for back ache and pain on my lower abdominal. I asked my surgeon is this normal as before the surgery he said the recovery process should be fast and would be able to walk fews days after the procedure. He said that it is rare for patients to have the pain that Im having. And cud be that my tummy is getting used to the stenting. I would love to hear on your post surgery experiences.

  16. Ana
    Ana Posted on November 15, 2015 at 7:39 pm

    Hi Jessica,
    Can you give us an update about your pregnancy?
    I had read all the messages on your blog, and I’m curious about it.
    I also have May Thurner Syndrome.
    Thanks by your answer and congratulations by this website!
    Best regards.

  17. Jessica
    Jessica Posted on January 8, 2016 at 2:42 am

    I really need to check this more often! Normala, I also had pain in my back and found that this is very normal for patients with our stents. My back hurt for several months after stenting but us now fine. My pregnancy went great, delivery was a little shaky as my daughter had the cord wrapped around her neck, but I still delivered naturally and have a beautiful, healthy daughter. I had no issue with clots during any part of the process. I was on Heparin injections until the day of delivery, resumed injections after she was born, and continued them for 6 weeks. My daughter, Rosalie, is now 4 months old!

  18. Vicki
    Vicki Posted on January 27, 2016 at 5:55 am

    Jessica congratulations on birth of your baby! I have been trying to find more research on MTS. My 1st Dvt was found in my left leg my senior year of high school, 20 years ago. It was thought to be due to birth control. During the pregnancy of all 3 of my children I took heparin & then Lovenox with my last child as a precaution. Through the years I had 2 addl dvts in the same spot, took warfarin & was fine. Then in 2012 as soon as I found out I was pregnant with my final child I had a blood clot in same leg (Dvt #4) & immediately started Lovenox. I started having trouble breathing, spitting up blood, severe anxiety & went to the ER 3xs & was told it was heartburn, told it was my asthma that went away when I was 10 yrs old, told it was anxiety, & told it was weight of baby on my diaphragm. I felt like I was dying & nobody listened until I went to a Physicians Assistant for a breathing treatment & when treatment didn’t help my breathing she took me to the ER, I was diagnosed with a bilateral PE. Scariest day of my life! My clot from my ankle continued to go up my leg to my groin & was breaking off going to my lungs & because I was 5 months pregnant by that time nobody wanted to treat me. Luckily the ER located a vascular surgeon at Baylor in Dallas to perform an emergency surgery to insert an IVC filter. I later spent the next 4-5 months on bed rest in & out of the hospital due to complications. However, baby boy was born & just turned 3. However, 3 months ago, now on Xarelto I got another clot in my left leg, hospitalized a few days & released. Since this last blood clot I have been in so much pain, it hurts to walk on my left leg. My whole left side foot to hand goes numb, tingling, pain, trouble breathing, etc. Once again I have gone to ER 3xs, dr says its fibromyalgia, been told anxiety, PTSD, etc, etc, but I know there is something else wrong & nobody will listen. I have been unable to work due to the intense daily pain so I no longer have insurance or $$ to push a dx. ?

    • Becky Davis
      Becky Davis Posted on February 9, 2016 at 2:53 am

      Vicki, There are several things I would suggest. First, find a vascular surgeon who is board certified who will perform an ultrasound or pelvic MRI to find out if you have MTS. If you do, then stents could help open the compressed iliac vein. Also, there are genetic issues that can predispose one to clotting disorders to include MTHFR 677, Factor-V, and others. I have chronic venous insufficiency from a DVT 45 years ago. I do not have stents, now, but am requesting tests for MTS. i do have the MTHFR gene mutation. We do not methylate properly and need to avoid anything with folic acid, the artificial form of B9. Folic acid can block our methylation pathways and cause a myriad of health issues. I do not eat fortified bread or any product like vitamins with folic acid. I take only a special form of B9 called L-methylfolate. I hope this might help. I’m fortunate to still be able to work and do have health insurance, so I know money is a huge factor in receiving the proper medical care. Don’t be ashamed to ask for help. You may have heard of an online organization called GoFundMe. You can advocate for yourself or have a friend or family member set-up an account for you through GoFundMe and explain your need and your situation. You would be surprised at the number of anonymous people who might respond, not to mention family and friends to help with your medical bills. I have not used it for myself, but I have contributed on behalf of friends and even one person that I didn’t even know. I hope this might help.

  19. Vicki
    Vicki Posted on February 13, 2016 at 8:28 pm

    Becky,
    Thank you for your reply! Luckily I have found a vascular surgeon that is conducting research & a clinical trial on post thrombotic syndrome in Dallas. I am scheduled for an appt with him March 4th. Hopefully I can get the help that I need. I had the genetic testing done in 2012 & was negative for genetic conditions, however my grandmother & 3 aunts on my dads side have also struggled with blood clots. If you have any advice on questions to ask & things I should know for my appt., I would greatly appreciate it. I have been dealing with clots for 22 yrs.?

  20. Sarah
    Sarah Posted on February 16, 2016 at 5:58 am

    I had a DVT in 2011 just 2 months after giving birth to my second child. The surgeon I saw said it was the worst he had ever seen, I was in the ICU for two weeks, daily clot busting procedures for about a week that were making little process and I kept clotting. I had three stents and a filter placed but the first few stents reclotted, I was told I almost died. I still have one of the original clots it never completely dissolved. I’m on jantoven for life. 7 weeks ago I delivered my third child, no complications. I took lovenox and heparin during the pregnancy and for 5 weeks after and I’m back on jantoven. I noticed on my patient summary of my last dr appt it mentioned the possibility of this syndrome so I looked it up and found this page. I still struggle with left leg pain, swelling, pooling blood, and discoloration. Last year I went the the ER I think three times because I was having increased symptoms but each time there was no change in my clot, so this syndrome/PTS makes sense as to why I had increased symptoms but no change to my clot. Definitely want to do more research on this. Also my family and I have been so confused as to how such severe clots could happen at my age, I was just 22 when I had my DVT and never given a definitive answer as to why.

  21. Kim
    Kim Posted on February 21, 2016 at 2:26 am

    Jessica – Thank you for sharing your story!! Congratulations on the healthy arrival of your little angel.

    I started clotting in my 20’s, all superficial clots which went unexplained for 15 years until I was undergoing fertility treatments and suffered a very painful upper thigh superficial clot. Looking back, I could reason that my superficial clots resulted from taking birth control & my being a frequent air traveler. There was never mention of genetic testing. Shortly after the very painful clot, I became pregnant and my doctor requested an entire blood workup to determine why I had had so many clots and miscarriages. I learned that I had both Factor V Leiden (hetero) and MTHFR A1298C (hetero) – neither of which should increase my risk of clotting very much. I also learned that dehydration or change in diet (like following South Beach or Atkins) typically resulted in my having superficial clots. Upon first having symptoms of a DVT, I reached out to fvleiden.org (no longer active) and the folks there told me to request a catheter directed thrombolysis (CDT). I am so thankful they did! My primary care doctor was going to treat me with warfarin & rest. I found a vascular surgeon & requested the CDT, telling my primary care doctor after the fact. The surgeon got me in 8 days of the DVT onset and during the CDT, discovered I had May-Thurner Syndrome (MTS) and put in a stent. I didn’t have any post thrombotic symptoms (PTS) & was surprised that I was no longer light-headed when hiking or running. During the last 4 years, since the stent placement, I had not had any clots. It was amazing that I suffered for 20+ years of clots and one little stent magically erased them. Until last week… when I got up after sitting for about 30 minutes, my left leg felt heavy…I immediately went to the local ER & they transported me to a larger hospital. I relaxed, leg elevated, on thinners for a week and was scheduled for a CDT 12 days after the DVT onset. I am still in recovery now – after learning my original stent should have been placed a bit higher and a 2nd stent was put in during the CDT. Hopefully I won’t have PTS after this last DVT and that I will be back skiing & hiking again next week…

    Takeaways – Know your body, be your own advocate, don’t settle

    All the best for a clot free future!!

  22. Julieanna
    Julieanna Posted on February 24, 2016 at 1:53 am

    Hi,

    My name is Julieanna. I was diagnosed with MTS in 2013. I was 15 at the time. At the time, no one had even heard of MTS and mainly still don’t. It’s nice to have sights like this to kind of help and to know that what you’re dealing. I was curious has anyone here that has MTS experienced pregnancy? I haven’t really talked to my surgeon yet but I’m still curious as to that aspect of it.

    Thanks in advance!

  23. Juli
    Juli Posted on March 1, 2016 at 1:52 am

    Why does it say only women can get this? My brother has this. Someone should change this bad information. Thanks.

    • L F
      L F Posted on March 1, 2016 at 6:39 am

      MTS is more commonly diagnosed in young women. It is 3 times more likely to occur in women as men. But, you are correct, it does occur in men too. We will add a footnote to this young woman’s story to reflect that.

  24. jenn
    jenn Posted on March 10, 2016 at 9:02 pm

    Thank you for all the info on MTS I was just informed at the doctors that I have MTS. I’ve had DVTS and PES and now going in for stents this Monday and i’m super scared as I am only 30 any other info is greatly appreciated
    Thanks Jenn

  25. kim rendleman
    kim rendleman Posted on March 21, 2016 at 9:14 pm

    Good Morning Ladies
    I too have May Thurner Systrom. As of today Im back in after 10 years of being therapeutic. Im am going to win this one too.

  26. Tana
    Tana Posted on May 23, 2016 at 4:07 am

    Hey everyone! I’m really happy I found this site! Nobody I’ve talked to knows about MTS. I found out I had MTS in 2013 when I was 8 weeks pregnant and after three doctors visits full of misdiagnosis I ended up in the ER with bi lateral PEs and a clot from my hip to my ankle. I had a filter placed and was on two shots of loveonox a day for the rest of my pregnancy. I’m so grateful that my daughter and I are ok. She’s three now and perfectly healthy and darling! I’ve been advised to get a stent but I worry about the long term complications. I’m glad to hear that Jessica had a successful pregnancy with MTS and a stent. Thank you for sharing your stories!

  27. Carryn
    Carryn Posted on June 12, 2016 at 6:26 am

    Hi ladies and gents
    I have previously been a passive user on social media in general and the May Thurner sites but I felt today I just needed to say a big thanks to all of you. I was diagnosed 4 years ago 8 days after my son (second child) was born. I didn’t have surgery or stent at the time as was bleeding post birth and then I had really good symptom recovery on clexane for 6 months. After being asymtomatic for almost 4 years now I had started to think my condition was pregnancy related and all woul be fine. Except this week I started getting pain in my left buttock. It was getting worse so I got back online to check out if this was common. I read all your comments and thought it does feel like pulled muscle and felt encouraged to check it out. As it is a long weekend here it was tricky but eventually I did have an ultra sound, and yes, I do have another clot in my buttock. Interesting conversation with the sonographer as she had never seen a vein in someone’s bum before- it was a collateral that developed from the first clot. Well I am getting on to it now so atleast t will be managed. Once again a big thanks to all of you as to be honest I was looking for excuses to ignore it.

  28. Audrey
    Audrey Posted on June 12, 2016 at 8:20 pm

    I have not been diagnosed with MTS, but my doctor just told me about it the other day, and I am so glad I found your story! In March of this year I flew to Pittsburgh to visit my older sister, and while there I noticed my knee-high boots were fitting tighter on my left leg than my right. I thought nothing of it until a month later when I mentioned it to my dad, and he suggested I go see my primary care doctor. I had swelling all the way from my left ankle into my hip. My doctor first suspected a DVT, so they conducted an ultra sound, but found nothing. Next I had a CT done to see if the swelling was caused by something else. The CT showed a DVT in my left external illiac vein. I was immediately put on blood thinners and told to stop taking my birth control. I was on the blood thinner for almost a month with no improvement to the swelling, and several trips to the ER with complications breathing. Thankfully, I had no clots in my lungs. Because of the lack of improvement I was sent to a hematologist for further insight, and after countless blood tests, nothing. I just spoke with a vascular surgeon this week and he mentioned MTS to me, which is what brought me here. My diagnosis is pending, but thank you so much for sharing your story!

  29. Jessica
    Jessica Posted on June 30, 2016 at 6:50 pm

    Hi Everyone!
    My daughter is not 10 months old and I am still DVT and clot-free! I wanted to share with everyone who left new comments that there is a fantastic support group for MTS run by a woman named Diane. I have been a part of this group for a few years now and it has been a tremendous help. Besides being a forum of information the Google group that you can join includes sub-groups for pregnancy, men, and other specific MTS questions. It also includes a list of doctors highly recommended by members from around the world, a glossary of all the terms that doctors might use when discussing MTS and more! I have gotten a lot out of this group and really want to share: http://www.may-thurnersyndrome.org/ Click on Join Us and Diane will do her best to get you set up as quickly as possible (there are so many people joining from so many countries that it is like a full-time job for her now!). Those of you looking for more research will find a lot more information here. I hope it helps! I hope that everyone is doing well and finding the answer they are looking for!

  30. Jessica
    Jessica Posted on June 30, 2016 at 6:51 pm

    I’d like to edit my above post to “My Daughter is NOW 10 months old.” Sorry, I teach high school English and that is bothering me.

  31. Misty Nichols
    Misty Nichols Posted on July 21, 2016 at 9:05 am

    Well where do I start : I had a DVT from the middle of my chest to my toes on my left side after I had my 3rd child they said do to pregancy well he is 14 now and I have had so many problems with my leg but doctors said its not hurting so I suffered well I have another DVT well I’m suffering again and all my test have came back negative to why I get them I also had one in 2007.. So I been researching and came across your story so now I’m calling the surgeon I seen and tell him I want tested for this I’m so tired of these clots.. I aslo have ulcers on my leg and alot of discoloration and white spots from where I had clot befor.. Thanks for your story mayb I have hope now 14 yrs of pain 🙁

  32. Morgan Young
    Morgan Young Posted on July 26, 2016 at 5:45 am

    Hi! I’m 24 and last year I was diagnosed with may Thurners. I spent a week in the hospital and have several stents. My doctor has weaned me off all blood thinners and now am on an aspirin regiment. I’m really glad too. If you take coumadin, you are getting poked all the time but if you take ones like eliquis, it is costing a lot of money! It is really refreshing to know I’m not the only one out there! I’m so glad I found this!

  33. Ali Shore
    Ali Shore Posted on August 8, 2016 at 1:31 am

    I have Antiphospholipid Antibody Syndrome (APLS) and have had 2 separate, life threatening episodes of multiple, bi-lateral Deep Vein Thrombosis with multiple, bi-lateral Pulmonary Emboli. The APLS was not diagnosed until months after my second life threatening episode– even when I was “therapeutic” on Coumadin (Warfarin). I had surgery to place a permanent stent in my Inferior Vena Cava to prevent future DVTs from entering my lungs.
    I also have Venous Insufficiency and Incompetency in which I had a procedure to seal off the leaky veins. I’m not an MD, but from my experience and knowledge, you can have children. You will most likely be placed on Lovenox injections before during and after pregnancy. As far as I know, the main complication with pregnancy and these disorders is when you have any veins or arteries coiled- especially ligaments /veins/arteries in the pelvis.

    Thanks for sharing your story!! Good luck!

  34. Blanche, RN
    Blanche, RN Posted on August 19, 2016 at 6:11 am

    Ali, Is it possible that you had a “filter” placed in your Inferior Vena Cava to prevent clots from future DVT’s from traveling to your lungs instead of ‘a permanent stent’? Stents are placed to keep vessels OPEN and filters are placed in the Inferior Vena Cava to CATCH clots (or remnants of clots) which have separated from the site where they formed and are traveling towards the lungs. These IVC filters prevent Pulmonary Emboli which are life threatening. Just wanted to clarify. I have also suffered from DVT’s and Post Thrombotic Syndrome, have an IVC filter, will take Warfarin (Coumadin) orally for the rest of my life unless a drug is created that will reduce my chances of future DVT’s as well as keep my filter patent. I have had this filter since September 2011 and so far, so good. I know there are plenty of law firms on TV scaring people from having Filters placed, but I feel that it possibly saved my life. It was placed prior to a Total Knee Repacement to ‘catch’ any clots that might travel towards my lungs. It was intended to be precautionary and temporary – in for about 3 weeks, then removed. Before removal, dye is injected to visualize the exact location of the filter and verify that there are no clots present in it. Mine was 3/4 full of clot material and that is why it became permanent. I was told 90% are able to be removed successfully. This all occurred after I told doctors and nurses on two separate occasions post operatively that I was pretty sure I had another DVT – the pain is undeniable, and was not in the knee as much as the calf. Unfortunately, two separate ultrasounds did not locate a clot. So, the point is, YES, BE PERSISTENT! But, sometimes things still do not work out as well as they could. MEDICINE IS NOT AN EXACT SCIENCE. Having the right doctors is also a good point made by others on this site. Good luck to all of you!

  35. Sarah
    Sarah Posted on September 19, 2016 at 11:18 am

    Hi, I am a 39 year old female born with a congenital hip disorder called hip dysplasia. I have had my left hip replaced and was thought to have lymphedema. I have had a DVT the entire length of my left leg. Been on xarelto for 10 months now. I must keep my leg wrapped 24/7 to maintain the swelling. I was referred by my PCP to a vascular specialist last week who diagnosed me with MTS. I am scheduled for a stent placement next month. I am hopeful now that some of my symptoms of swelling and pain will reduce after the procedure. I have had “lymphedema” for nearly two years and had resigned myself to thinking this would be the rest of my life. It has been very difficult trying to work, care for two small children, as well as my home. I am thankful for a good PCP who referred me to the vascular specialist (2 hours away). Praying for life changing results, but will be thankful for any improvements. Good luck to each of you on this journey.