My story (May Thurner syndrome)

This is my story about may Thurner syndrome. I am no expert on this condition I am still learning. This video was originally for my family out of state and my friends to let them know what was going on with me. I am from Utah and I am one of the youngest my doctors have seen diagnosed with this. I know I am not the youngest person in the world so I am sorry for not specifying, Please like and give it a share I will post my go fund me down at the bottom thank you everyone (:
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[@sweetgirl88980]

I have been getting requests to do an update video. Is anyone interested in that? Are there any questions you guys would want me to answer if I did do an update video?

[@peggyj.2583]

I have May Thurner syndrome. I also got a major blood clot in my deep venous veins because of it. Also known as a DVT. The blood clots that were in my veins had been there so long that they changed into scar tissue. So now my veins are permanently narrowed/damaged which is giving me the pain of a DVT, every day in my life. I now have to wear compression stockings for the rest of my life and just live with the pain. They can't do anything about it, and I just turned 20 years old. This happened to me in 2013.. I was 16 at the time. you are not alone girl. We are one of the few people in the world that have this especially at such a young age, and boy does it suck. I am from the Netherlands btw.

[@ellerj641]

I was diagnosed last year. In December of 2022, I was as healthy as I could be. Then I suddenly started having pain in my lower left back. In one month, it escalated quickly. At the end of that month, I couldn't walk. I was in excruciating pain in my lower left back, left hip, and all the way down my left leg and foot. For the next 6 months, everything just got worse and worse. My whole leg swelled up and continued to swell along with a massive swollen bump on the back side of my leg that made it impossible to sit down. I got only an hour or two of sleep at night from the pain, I was nauseated, chest pain, very dizzy, and had horrible memory loss. My whole upper back and shoulder blades went up with excruciating pain and my whole right arm became numb and weak. I couldn't form coherent sentences or string words together. I would go into another room and I would literally have no clue where I was at or what I was doing.

[@marvalouswill3888]

Hi. I was diagnosed with may Thurber a few weeks ago. I did a procedure yesterday where they put a balloon in my vein.

[@gracepalmerxo]

I am 20 years old now and I just finally got diagnosed with May Thurner syndrome. I had a bad blood clot when I was 18 years old in my left leg. From my own research I kept thinking it was May thurner from the research I have done but specialists that doesn’t have much knowledge with the syndrome kept thinking it was other causes. I am currently taking Eliquis and waiting for a surgery to get stents put on my leg. Thank you for sharing your story, mine sounds very similar to yours. I hope all is well for you, god bless 🤍

[@heatherdrumm895]

I have may thurner syndrome three stents 18mm 12mm 10 mm and a clotting disorder I'm on xalreto for life I have joined a may thurner syndrome resource group on Facebook so much great info and alot of awesome people I never feel alone

[@taylorduncan6294]

Yo Alexis! I’m in Salt Lake as well! In 2009 (23 years old) I had my first DVT in the left leg. Did all the clotting agent tests and all came back negative. Docs took me off blood thinners. 2013 (27 years old) studying for my last final of grad school too long and ended up with 12-15 pulmonary emboli. They put me on blood thinners for life and didn’t really try to determine my issue. I guess that’s how they treat the old peeps with our issues...

[@y.a100]

i was diagnosed with may thurner syndrome, also nutcracker syndrome, and i have polycythemia vera (very rare blood cancer that causes dvt's and blood clots).

[@My03Tundra]

My May-Thurner lead to me developing a substantial DVT in my left leg, from my foot to my IVC, that almost cost me my life. It was bad enough that had the ICU not been full of Covid patients, I would have been put there. I’m scheduled for another stent next week and I’m nervous as hell about it.

[@pamelaandjosephsafago4904]

Thank you for sharing your story! It's true - Not too many physicians know about this syndrome so it causes a huge delay in the correct treatment. I have multiple food intolerances, so the abdominal discomfort I would feel was always seen as "something I ate". Left leg was swollen, thigh to toes. This was seen as having too much salt in my diet. This has been going on for the better part of 10 years. Recently went to hospital for stomach pain. Got a CT scan. Results were faxed to Heartland Radiology (Grand Island, NE) and within 30 minutes I was diagnosed with May-Thurner Syndrome and Pelvic Congestion Syndrome. Surgery was scheduled days later. They put in two coils. Never heard of coils. It's been a month since having the surgery and I feel wonderful. No swelling and my legs and stomach feel normal. These guys seemed to know what they were doing!

[@peggyj.2583]

Btw, good luck with your surgery and I hope your future will hold more luck.

[@guitarjeff55]

I feel for you. I have MALS. It’s rare even more over male mid sixties Thanks for sharing

[@leslieperez1872]

I was just diagnosed with MTS, but my goodness, you've had it worse than me. I feel for you with all these surgeries. It is not fun dealing with all of that.

[@jmccarthy6178]

I have MTS and PCS. Thanks for sharing your story

[@jaquicx9500]

Wow, this video (and these comments) make me so thankful for my doctor at nyu Langone. Thank you for sharing; it helped me realize just how lucky I am.

[@rob8959]

I was a 23 year old male when I got my blood clot. It was a couple years later that I was diagnosed with May Thurner's Syndrome. I never had a stint placed and am still have an occlusion in my left Illiac vein and a partial occlusion in my Vena Cava. This will be a life long endeavor for you, I wish you the best.

[@Lannie74]

I love your video. I just had my 2nd surgery for may Thurners dvt. They just put in a 2nd stent and lowered it because it was too high and causing excruciating low back pain! I know exactly what you mean about the pain in the surgery because they didn’t put me to sleep either and I even asked my doctor if he could put me to sleep for it but he said it’s too dangerous. I just pray this was the last time I will need surgery

[@benita21092]

I’m sure you are busy, I’m so glad I came a too your video. Today was the first time in 3 years that a doctor told me he thinks I have it. I have to go in to confirm. I’ve have swelling for 3 years and no one was concerned I kept bringing it up and no one said anything. Until today! New doctor said I have ever symptom of it. I really hope we resolve this, I have 4 kiddos and I wanna be around for them. I knew something was off but didn’t know how bad it was till today. It’s so scary 😟

[@bdngnsja9543]

This is really amazing, my dad has may-Thurner syndrome 1 year ago, he has has 4 surgery’s and nothing has worked, his clot is getting bigger and more worse and he may not make it. He’s getting another surgery in September and I’m very nervous I’m glad that you could share this story and god bless you ♥️

[@themysticmuse1111]

Thank you for sharing. I do believe I have this. I've had vein stripping in both legs. But,but. Something is still not right. The swelling. Smh.