Sarah Bell’s Story About May-Thurner Syndrome and Blood Clots

Categories: News,Patient Stories

Photo is Sarah, husband Dustyn, and daughter Ashley
Photo is Sarah, husband Dustyn,
and daughter Ashley

At age 26 in June 2006, I was diagnosed with a deep vein thrombosis (DVT) that extended from my ankle to my groin on my left side.  I was unable to walk, because of intense pain and swelling in my leg, and I thought I was going to die.  I was too scared to move, breathe, or do anything due to fear that one wrong move would send the clot to my lungs and kill me on the spot.

I spent a week in the hospital and was discharged on Coumadin® and compression hose.  I didn’t know the reason that I developed the blood clot, and my doctor’s only thought was that it was due to birth control pills, which I no longer take.  During this time I was doing research online about what could be done about my problem, but everything I suggested to my doctor was dismissed.

I experienced severe anxiety during the months after my hospitalization, because I believed this clot could kill me.  Moreover, my leg had not really improved; I still had swelling and pain.  I asked several times for leg scans to see what was going on, but again my doctor dismissed my requests.  In December 2006, it came time for me to come off my 6 months of Coumadin® therapy and I was scared at the idea of stopping it.  I remember having this conversation with my doctor and he said that 6 months on Coumadin was standard practice for a DVT.  I have since found out that this is more often true when the cause of the blood clot is identifiable.

My leg remained swollen and painful into the early part of the following year.  I finally convinced my doctor to order a Doppler ultrasound in February 2007 that showed another clot in my groin, and I was admitted to the hospital for another week.  My suggestions for treatment based on my reading were still dismissed.  I was told that I probably had a genetic clotting disorder, and that I would probably be on Coumadin® for life, and was also advised against any future pregnancy.  I was tested for blood clotting disorders such as factor V Leiden, and the tests were negative.

I finally realized I was more than overdue to change my primary care doctor.  I chose a new doctor who saw me during my hospitalization, and was very receptive to investigating what was going on with my leg.  I went to a hematologist, a geneticist, and all were stumped because I had no genetic clotting disorder.

My body started changing soon after this; I started developing “lumpy veins” on my lower abdomen.  I went back to the doctor and he sent me to an interventional radiologist, who took one look at my stomach and said there must be a clot in my pelvis or stomach.

He scheduled me for an immediate venogram, although, at this point, it was already February 2008, an entire year and a half after my initial DVT.  The venogram showed an 8 inch clot in my pelvis.  I had been walking around for almost 2 years with a massive clot in my stomach that extended all the way down to my ankle at one point.  I don’t remember much of what went on in the hospital that time, but I was diagnosed with May-Thurner Syndrome (MTS) for which I was given a clot busting drug and a stent was put in my vein to improve blood flow.  Unfortunately, in the time that I waited for someone to listen to me and help, there was permanent damage to my leg, and it will never be the same.

This was the first time I ever heard of MTS.  MTS occurs when the left iliac vein is compressed by the right iliac artery and creates a clot due to pooling of blood.  MTS is more common in young women, although it is a rare condition.  I believe MTS should at least be considered a possibility when a young women presents with a DVT in her left leg.  One of my hopes in telling my story is that it becomes more common practice to keep MTS in mind during assessment of a DVT in the left leg.

I am, however, still here and alive.  I am lucky that I had my daughter Ashley before this nightmare started, because it is too risky for me to have any more children.  She is truly a blessing as well as my husband, Dustyn.  I would not have made it through this without his love and support.  I will be on blood thinners and wear compression hose for life.  My other hope in telling my story is that people learn how important it is to stand their ground and demand to be listened to when dealing with healthcare professionals.  Patients are more aware of what is going on in their body, and are usually right when they sense something is wrong, even though healthcare professionals are trained as clinical experts.

Take Home Messages

  • See messages of author within her story, particularly the possibility of May Thurner Syndrome when there is a DVT in the left leg that does not resolve.
  • Be an advocate for yourself in seeking care and trust what your body is telling you.
  • Birth control pills increase risk for blood clots.

Posted December 2011

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20 Responses to "Sarah Bell’s Story About May-Thurner Syndrome and Blood Clots"

  1. Kelly Posted on September 24, 2013 at 12:23 am

    Thank you for your story. I just found out Friday I have MTS. I have had pain in my legs for 5 years but it has gradually gotten worse. In addition to MTS, the valves in my upper legs do not work either. This is a scary, painful condition and I appreciate hearing about other peoples stories.

    • danni Posted on February 4, 2014 at 11:35 pm

      Hi, I have been diagnosed with MTS for about a year now. I had a DVT 10 years, due to this DVT 9 years later I developed the signs of PTS and Chronic Venous Inefficiency (the valves in my upper legs do not work either.)Everyday day I wear a compression stocking to help with my swelling and this seems to help. No living with Lympehdema and wanting to have children I wonder what the years a head hold for me.

      MTS is uncommon and not many people in Australia have heard of it. Most GPs I speak to need me to explain what it is and i have been given the option to have a stent put in however I have decided against this. At the moment my vein only has blood flow restriction when I lie down, and why put a stent in when there’s no guarantee it will help with my leg symptoms, due to me having a Chronic Deep Vein Thrombosis which is now calcified to my vein.

      There also seems to be little research / foundations in Australia for this kind of thing. Sarah my heart goes out to, and keep strong!! If i o\coudl do something I’d love to raise awareness, money for this Vascular Disease to make sure people understand the risks associated with DVTS and how life changing they are.

      Any feedback would be appreciated.

  2. Kieran O Leary Ireland. Posted on September 24, 2013 at 8:29 pm

    Hi Sarah, Reading your story, my heart go,s out to you. My story is the same as yours, When they discovered the cause, M T S . IIt was too late to do anything about it.

  3. Chelsea Posted on September 30, 2013 at 5:20 am

    Hi Sara my name is Chelsea
    I’m 15 years old and I start having a pain where my grown area is, well within 3days I couldn’t walk without crying.! I thought something was really wrong my mom said its probably a cyist.but I couldn’t walk so she took me to the ER. It took them 2 hours to get me in a room and by then my leg was swollen and have what looked like red spiterweb all over my left leg. When I saw it I thought I was going to loss my leg. I am 15 and before this I was a regular 15 year old they took a immediate ultrasound and found I had a clot from my ankle all the way up to my lungs and yes it was solid.! When i heard the new I thought I was dieing I was so scared and the rushed me to Cooks Children’s Hospital and I had 4 surgerys back to back I have a stent by my overys and if I do get pregnant it will be life threating and that scarys me any day I could relapse I was normal before this now I have to where this tight hoes and take 2 shots a day exactly 24 hours apart.! I want to tell my story but I don’t know how

    Love The (NotSo) Normal Girl

  4. Sandi Posted on October 16, 2013 at 4:31 pm

    Dear Sarah,
    I had a massive blood clot in my upper left leg/groin area in 2006, age 62 I figured it out myself–stiffness & some pain (not much) in back of leg, not front. Brighter pink coloring, turning to red, rock hard on the back,and the leg almost doubled in size in the half hour getting to hospital. Also, my heart rate went up, over 130 and blood pressure was 25 points above normal. In e.r. they did a Doppler & said it was a clot, a “biggie,” but they didn’t do a C.A.T. scan. If they had, they would have found the clot(s) extending into the iliac then and diagnosed the May-Thurner Syndrome I’ve had all my life, It was found this year,June, when I had another similar situation. This time (June 2013) I got there BEFORE the clots showed up in the leg.(there were lots of them, almost one big one in entire iliac area ) Dopler showed no DVT (clot) but very restricted blood flow and the tech knew there were clots in iliac, which was confirmed with the C.A.T. scan. Twelve hours later I was in surgery for the clot-dissolving , angioplasty and insertion of a stent, a 4-hour procedure done by an excellent, pleasant but very professional team–they even asked what music I liked & played both Zydeco and classical. Vascular surgeon gave me OK to resume normal activities (iincludes dancing, playing volleyballl and a job as a landscaper/gardener) two days later. My leg, which had been slightly swollen since 2006, looks normal now, I’ve lost a few pounds without trying, remain at ideal weight and have more energy. I appreciate what the medical establishment did for me, but shouldn’t have had to wait (at great risk without knowing it) SEVEN years.

    • Betty Posted on May 31, 2014 at 8:18 pm

      Hello Sandi. I have MTS also. My story is similar to many others. As a result of my own research and insisting on seeing an interventional radiologist my clot was dissolved within 8 days of onset and a stent was placed in my collapsed vein. The first hospital sent me home with a huge leg, pain killers, Coumadin and said good luck. The second took excellent care. I was also treated by an amazing team and skilled interventional radiologist. It’s been six months and I feel great. Leg is almost back to normal size. I take xeralto each day and wear a thigh high compression hose during the day. I’m trying to understand the necessity in wearing the hose. My blood tested fine – had nothing to do with the clot. My hematologist wants me on xeralto for one year. Are you on blood thinners? Do you wear compression hose?
      If so, have you been told it’s temporary treatment?

      Thanks so much

      Betty

  5. Pauline Mansfield Posted on October 17, 2013 at 12:40 am

    Hi sarah I would love to be able to speak to u as my 18 year old daughter sara has just been diagnosed with MTS. your story is absolutely identicle to yours. Anyway help and advice would be brilliant xx

  6. Carey Drum Posted on October 17, 2013 at 11:01 pm

    Hi Sarah, I just wanted to offer that occasionally, as is my case the right side is effected! As rare as MTS is right sided is even rarer! I also waited 2 years while I fought to find someone who would listen to me.

  7. Beth Posted on November 8, 2013 at 2:11 pm

    Well I had an unexplained DVT in my left leg June 2012. Was on coumadin for 6 months. After 14 months of my left leg continuing to hurt like bruises I went to specialist that said my leg was completely clear of clots but wanted to do pelvic CT to check for MTS. He said I definitely had MTS and sent me to cardiologist for stent procedure. On Wednesday we began with venogram and was told no MTS was seen so no stent and for now no answers. Not sure next step.

  8. Tracy Posted on November 20, 2013 at 5:09 pm

    I have a similar story as well. I am a 43 year old female that developed groin and lower back pain on my left side in Nov., 2012. Since I was moving at the time, I figured I had pulled a muscle, but 1 week later when my leg was red and slightly swollen, I ended up in the emergency room and admitted to the hospital. The doctors figured it was caused by birth control pills and released me 1 week later. Unfortunately, less than a week later, I was being admitted into a different hospital, and finally, 2-3 weeks later realized I had MTS as I have no blood condition for clotting. Now, 4 hospital stays, numerous cath lab procedures, and 7 stents later, I am still completely clotted up and experiencing pain and minor swelling. I was switched to Xarelto earlier this year, which has been nice, but still concerned about the pain and swelling even though I wear compression stockings 24/7. If only they had diagnosed me sooner!! It should be automatic that if a person presents with a left leg DVT, it is considered MTS until and unless something else is found. It is also very difficult and frustrating to find doctors who can help, and I live in a large metropolitan area. I definitely sympathize with all of you!

    • Sherry Posted on May 16, 2014 at 12:06 am

      Be careful with the Xeralto. I go to Cleveland Clinic and i just tried switching from another blood thinner to Xeralto and a side effect of the drug is lower extremities swelling. I switched back to Jantoven. Be careful!!!!

  9. Yvette Posted on December 12, 2013 at 10:25 pm

    Hi All,

    I wanted to cry when reading your posts. I was 21 years old when I developed by first DVT – seven days after having my beautiful son. The clots were so severe – my leg was completely purple and only had minimal blood flow. I went to bed the night before with a little pain in my groin, pain the doctors attributed to childbirth, and woke up to what would be the most difficult years of my life. I spent the better part of two years in and out of the hospital with new and old clots, a pulmonary embolus, last rites, and the list goes on. Death and I have met at the doorstep a few too many times. At that time, I was counseled that more children were out of the question. My life would be in jeopardy. That was 25 years ago. Today, I’m 46 years old and last year, took the big step and had my tubes tied so as not to risk pregnancy. It took that long to come to terms with the decision. I guess I just wanted the option even if it was a life or death decision. I was told that there are NEVER complications after such a simple surgery – boy were they wrong. I had another severe set of clots, all veins from my ankle to my groin. I spent the better part of 4 months in and out of the hospital nursing myself back to the new, new normal after this episode. I was put on a new medication called Xarelto, which did the job for me – the longer side effects are another story, but livable. In October 2013, I took a fall off a chair and landed myself in the ER to look for bleeding, broken ribs and ruptured spleen. I was so lucky that day, all things considered! The radiologist decided to include my pelvis in the contract CT! The fall was so hard, that my organs shifted and they could see clear as day that I had text book perfect May-Thurner Syndrome. Like one of the previous posts, the damage is so severe now that stents aren’t an option for me, they will have to harvest a good vein from my right leg and re-route. It makes me sad to think that another child could have been a possibility, the ability to wear tall boots, not have one pant leg tighter than the other, permanent swelling…need I say more? Today, three months later, I have a beautiful granddaughter, healthy 25 year old son and I’m truly comforted that I’m not alone in this journey! Good luck to you all!

  10. Caitlin Posted on January 13, 2014 at 10:44 pm

    Sarah and all,
    There is a great group for people who have MTS on both Google (more private, around 200 members) and Facebook (still a private group with around 325 members, but less so than the Google group) that are great sources of information, support and resources for those of us with MTS. You can find them by searching for the “MAY-THURNER SYNDROME RESOURCE NETWORK” or contacting the moderator of both groups, Diane Peterson. Please come take a look for us at groups.google.com

  11. Bg Posted on February 10, 2014 at 1:37 am

    I had a DVT in my pelvis, thigh and calf. It took me going to the ER twice after three docs said there was nothing wrong with me. I went to the ER (second time) and was given Coumadin and heparin shots. The next day I was resting on the couch and a doc from the ER called and tole me to head there immediately. I went to the ER and had a ct scan and a large clot was found in my pelvis and I had may Thurner. Within 30 min I was in surgery to have the clot busted in my pelvis and three days later I had two stents placed. I was in ICU for four days. If you think something isn’t right stick with it even if multiple doctors tell you your fine. If you don’t like what one says keep going to different people until someone listens to you it could save your life! My surgeon said if I hadn’t kept with a diagnosis the clot would have killed me. I also have Factor V clotting disorder and am on Coumadin the rest of my life. You can still get clots while on blood thinners. A couple months ago I had a pulmonary embolism.

  12. Donna Edgerley Posted on February 16, 2014 at 11:05 pm

    I was diagnosed with DVT in 2201. I had an IVC filter inserted and live amost normally with the exception of heavy bleeding, nose bleeds etc. Now at age 58 my leg began hurting and swelling .I am on 10mg of coumidin nightly and have weekly INR testing.I have experienced limitations in this past year since as standing and walking with pain; actually limping at work which is in school setting.NOne of my excellent doctors in Rhode Island could tell me what was wrong. I thought i just had a clot in my left calf. I was not prepared for what the doctor told me after a venogram this month. I have a signficant clot in my groin that will require stenting and phlebectomie. I read a lot of limited lifestyle and this conerns me. Does anyone have any experience with stenting and pain outcomes? Thanks and live well; it is life’s greatest revenge.

  13. Pam Posted on May 8, 2014 at 4:30 pm

    I have this same issue; I was told yesterday that there is nothing at this point that can be done due to June 6, 2013 will be a year. The blood flow is using my uterus vein for blood flow which is causing intense pain in the abdomen area. I truly would like some solution; with the intense pain in my leg and now stomach area it is unbearable!!

    • Charlotte Posted on May 10, 2014 at 9:04 pm

      Pam, Have you had stents placed? My blood was also using every route it could fine through my abdomen and uterus vein. My surgeons were amazed when they went in to place the 4 large stents. They said it was like a whirlwind in there.

  14. Kolby Posted on May 9, 2014 at 6:57 am

    Hi Sarah i was diagnosed with MTS almost 2 weeks ago i am 18 and my blood clot went from my groin down to my calf so they went in and removed 95 % of it last Tuesday i went to the Dr 2 days ago and my left leg has already formed another clot my first blood clot was the biggest clot the Dr has ever seen in his career so it’s very scary i will also be on blood thinners for life and wear those crazy tight socks

  15. Charlotte Posted on May 10, 2014 at 9:01 pm

    Wow Sarah! Your story sounds identical to mine. Only difference was I was full term pregnant when diagnosed with DVT. Discovered MTS two years after her birth and then had 4 stents placed as I was clotted from heart to ankle.. I’m now 42 and have been fighting this for 6 years now. Severe valve damage from size of clot and length of time not treated. I wear stockings religiously or I am in so much pain from swelling. 10 mg Coumadin a day.

  16. Megan Posted on May 21, 2014 at 12:43 am

    I am 16 and literally just got an MRI and CT scan yesterday and figured out one hour ago that I have MTS. I am seeing a professional this Friday to determine next steps, which can be anything from blood thinners the rest of my life to surgery. Needless to say, I’ve taken the liberty of doing all the research I can. So far, not liking what I am hearing. We are ninety percent sure I had a dissolved blood clot about 5 weeks ago so when I got my Doppler exam, nothing showed up. Then they went on to see if it was compartment syndrome and a lot has gone on until as I stated before, the results came back for MTS. I have been having these issues for a year and a half almost and just spoke up about 5 weeks ago and now all this has happened. Life altering.

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