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@sweetgirl88980 Not sure what is going on with my comment. It will not post for some reason. I have looked her up and I would love to go see her, but I absolutely have no money to travel to her and to pay for everything out of pocket. I am at a dead end. All doctors now refuse to treat me. They are all telling to go back to the doctor who did my stent. The same doctor, and his nurses, who have nothing to do with me :/ I am currently having a bad reaction to the second blood thinner and I feel sick and more tired and fatigued than usual. But I can't get off it.

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. By some miracle I graduated from college and also got diagnosed. My left iliac vein was completely closed. Blood was going down into my leg, but not back up. The doctor put a stent in which was excruciating as I could feel everything. At one point I started hitting the bed with my hand to let him know he was causing me a lot of pain and he ignored me. After the stent, all my symptoms went away and I was doing fantastic for two months. With the exception of random lower back muscle spasms that would bring me to the floor and a swollen bump in the pelvic area. Well. After those two months, I have been going downhill again. I have been having nothing but problems that are just getting worse and worse. The doctor who did my stent ghosted me after surgery and his nurses have nothing to do with me. So I have been scrambling trying to find someone who treats May Thurner's. No one else really treats it. I have just finally got two doctors to confirm that the bump in my pelvic area, now massive and going all the way up to my abdomen, is a swollen vein. But no one will touch it saying they don't treat that, and they don't know anyone who does. Then I just got a phone call last night with the test results of my CT scan. I have a blood clot in my stent. My doctor wants me back on two blood thinners. I started out on two after my stent was put in, but I had a horrible reaction to it. I bruised like crazy. I literally couldn't put my arm down on anything no matter how soft and I would be black and blue all over. My whole body was black and blue. I just got off of one about three months ago and have felt so much better. Still bruising, but not as bad. But now the doctor wants me back on it. To say I am upset is an understatement. I am trying to figure out what to do, and find who can do something about my swollen vein before it causes major problems.

Could you tell me what doctor you see in Arizona? The specialist?

Thanks for sharing your journey with May Thurners and clots in both videos. The information can really help others. Best wishes & many blessings to you.

Who is the doctor in Arizona? Thanks!

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

I have may turner syndrome since 21 years and the doctor tell me everything will be fine with lovenox and compression sockets. Maybe my clots still there i need taco. They speak me about stent but there are few years another doctor tell me don’t be pregnant! I so scared about that! I have pelvic varices and varicose veins in the calf. You scared me about stent and if you choose ivf surrogacy it’s because isn’t safe?

Looking forward to a current update. My daughter is 13 and just had balloon angioplasty for this same reason. No stents yet but I fear that’s coming soon. I’d love to know more about the reasoning and journey toward IVF.

I too have may Thurner. I'm a rare case (male) that has one. Based on your last video one big help is if I am in a car, I get out and ambulate every now and again, which means to walk around. Also raising my legs for 15 minutes at a time at least once a day above my heart, by layingon my back... just a few things my doctor's taught me. With insurance bills like that, did you ever try to apply for Medicare or ssdi? The Lord has you in the palm of his hand.

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

I just had the same surgery as you did except the doctor went through the back of my knee. I’m a little worried though because I still have a lot of swelling and it’s been 2 weeks. He told me he put a really big stent in but he said he didn’t get all of the clots. I was told my clot started at the pelvis and went all the way down my leg. If I have to have another surgery I refuse not to be under anesthesia because it was the most painful thing I have ever had in my life!

what hospital was this???...they just cut you no anestisia???....crazy.

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

I apologize I have not done my update video yet. I was going to film one but I had some questionable pain I thought was coming from my stents. Since then they found an ovarian cyst that keeps growing that I may need to get removed I've been getting ultrasounds every 6 to 8 weeks. I wanted to post an update once I got everything sorted out.

I have this

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.

I was just diagnosed with May Thurner and having my stent surgery in two weeks . You’re story scares the heck out me . I hope you’re doing better .

ohh you look so different !

Hi Alexis. My daughter also has May-Thurner syndrome. Her first clotting episode was in 2014 when she was 16 years old. She just had a fourth surgery and a 3rd (large) stent placed two weeks ago, but it is already completely occluded again. I am really interested in your experiences. Also excited to hear about your journey to motherhood. My daughter is 23 now and she is starting to think about motherhood. I am also curious about the specialist you see. My daughter sees a vascular surgery team (along with many other doctors), but I would love to get her to someone who is more knowledgable about May-Thurners.

I JUST found you. I am going to be working with a doctor for a day and saw he specializes in the syndrome you have, I didn’t know anything about it so I typed it onto TH-cam and your page popped up. I can believe all you’ve gone through with crummy care in Utah. Is it IHC? Before you said you lived in Utah I figured by the way you pronounced “mountain” without the T you lived here…I live here now too. I hope things are getting better for you. I have to say you did a brilliant job explaining everything about this horrible syndrome. I’ll look for an update on your condition.

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 😟

Not sure why this was in my reccomended, but I have may thurners too! Haven't watched your video completely, but back in 2017 & 2018 I have had DVT's due to May Thurners. what my doctor did was put a stent on the vein that was being squished, and later on added another one to hold onto the original(the og one had moved up my vein and caused my second blood clot in another vein), making a Y. that way both veins stayed open. On another note, for my first bloodclot I was put on lovenox(injection blood thinner-would not reccomend), and for my second I was put on warfarin. I'd reccomend warfarin if you ever have a bloodclot from May Thurners. The warning signs I had of a blood clot was pain in my leg, swelling, and having blotchy skin(that was also purple/blue). If you see that go to your doctor asap!

I too have May Thurner Syndrome. I was clotting for several years and I waited too long when I was having major complications and almost died. My IR that treated me immediately knew what was going on because his grandfather had it and quickly did multiple surgeries to save my life. I am very thankful that the PE's missed my heart and just went to my lungs. My whole left side was covered in DVT's too. Please feel free to reach out to me if you need someone to talk to. I am on Eliquis too for the rest of my life. I'm at a high risk also because I am in a wheelchair. Please keep us posted and take care.

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?

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 🤍

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!

I was diagnosed with pelvic congestion syndrome and when the doctor went in to fix my right ovarian vein he checked out all of my veins. He diagnosed me with may thurner. He basically just said yeah you’re at risk for blood clots and I don’t think you need a stint right now, come back if it gets worse(pain). It’s frustrating because I feel like I can barely find any info about this and now just paranoid I’m going to end up with blood clots at some point

Wow I would like an update!

25 here and finally diagnose. I probably wouldnt get a stent, because I plan to have lots of kids. And do not want to clot.

I’m wondering if I have May Thurner. Because of Covid the diagnosis is very slow. I have the blood clot in my iliac in my pelvis and my left leg is massively swollen thigh to toes. I’m on blood thinners and have ultrasounds booked. Cat scans were done but no specialist appointment and its been a month now.

None of this sounds right or fair to me rather unjust in the ignorant medical field? I’m just wondering if your in Utah why didn’t you go to the Interventional and Vascular Vein Center in Utah they are currently the only place that treats pelvic congestion syndrome nutcracker and May Thurner with the highest success rate in the US there aren’t many, Also I know this is years later but if anyone wants the truth and the way to currently diagnose and treat these no cure disorders check out the article on PCS on nourishing things .com and buy the only book written in the world by doctor and professor Mark Whiteley from the Whitely Clinic in London. May Thurner and Nutcracker are in it it’s called pelvic congestion syndrome chronic pelvic pain and pelvic venous disorders by Mark S Whiteley on Amazon the most informative book ever on these disorders.

How are you doing now? I’m getting two stents on Wednesday feeling a bit nervous .

Mine didnt show up till I got pregnant when I was 25. I had a massive clot behind my right knee in the popateal vein and multiple in my lungs. Was on lovonox for 7 months. In 2015 then after birth I was on eliquis then got a massive clot in the left ivc. That was massive it went from my pelvis to my toes. Stented in 12 of 2018 went a full year then in 2020 my right leg swelled 5 inches larger than the left. I had such a massive clot in the Ivc 5 inches from my heart. Down through both left and right IVC and the branches to both legs plus 2 in both my lungs. Stented again I still get swelling and massive pain in both my legs. I'm on xarelto 20mg was highly advised NEVER to have kids again because it's so dangerous because of the stents and how badly I clotted the first time.

I have MTS . And I'm 15 years old. I found this one month ago.

Recently got diagnosed with this, and live here in Utah. Getting the same run around, currently on xarelto due to a stroke. Did you have a venogram? My ultrasound showed may turner (and they suspect nut cracker syndrome) but now the Dr's are wanting me to do all sorts of tests... It's frustrating!

How are you now...... I just saw your video I was diagnosed in 2018 when I was 38w5d pregnant with my 1st baby 😣 it was horrific!!! I have a couple ?s for you if you dont mind

My daughter just was diagnosed with it ! She is 16 years old

Alexis? My girlfriends daughter has May Thurner Syndrome. very difficult times for the family. I'm wondering if maybe you can offer some more knowledge for her mom and daughter, maybe via facebook or some other venue. Her daughter is 16, we've seen more symptoms and difficulties in the past year since she went through an incredible growth spurt. I will direct both of them to watch your video. We are from Canada, no specialists around close or any specialists. So difficult to watch her daughter like this and difficult to watch mom holding in her emotions.

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. They didn't put stints in my leg, but they did put a little balloon thingie. They said I was too young for a stint, but you're even younger than me! I was on Xeralto at first, which made me bleed out, made me get blood transfusions. Then I was on Lovenox while in the hospital as well. As an out-patient, I was on Eliquis. I was told about Coumadin, but never had to do that one. I hope everything is going well for you now, health wise, two years later.

I have had swollen leg for 15 + years and docs were not able to diagnose..

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 ♥️

Do you must to take anticoagulants for life so that blood clots do not form on the stent?

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. I'm glad you're here to tell the tale. Bless your heart.

Do any of you know the cause of your may-thurners? Can a hip problem caused by having one leg longer slightly longer than the other be the cause?

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.

I have had severe pelvic congestion syndrome with may thurners for 7 years now. You are not getting “surgery” when you are treated. The stents for your veins and embolozarion for your ovarian veins is called a catheterization. Usually you are always awake for those so it is not out of the ordinary that they keep you awake. I never had pain so that is so sad they didn’t manage your pain while you were getting the Caths done.

I have MTS and PCS. Thanks for sharing your story

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.

I was diagnosed with May Thurner Syndrome. It was in August.. one doctor says I need stents and the other doesn’t.. I’m off my blood thinners in a couple months and I’m scared. Does anyone have any good advise for me? Me email is argreulich@gmail.com ... or Amy Greulich in Facebook.. please guys I really need some advice

I'm 15 years old and I have been diagnosed for DVT (Deep Vein Trombhosis), I've already put on compression socks and drink blood thinner pills but it's been a year my leg didn't even get any better and last week my sickness got worst so my mom decided to bring me to the Emergency and somehow my doctor diagnosed me with this sickness, he asked me to do a test to see if I really get this sickness, honestly I'm soo scaredd 😭