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- เผยแพร่เมื่อ 26 ก.ย. 2017
- 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 (:
th-cam.com/users/redirect?even...
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?
Yes please make a update vid :)
I'd like an update video as well, please.
Yes. My doctor also kept me fully awake. When they brought me to recovery I cried just from the traumatic experience.
Yes, please do.
Did you experience weakness, fatigue, sweats or anything like this in conjunction with the pain and swelling?
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.
Peggy Jasar ahh my TH-cam d idnt even tell me you messaged me so I had no idea or I would of replied faster! I am so sorry that's is crazy. I just had my 5th surgery and the doctor that placed the two small stents started to narrow and clot she she had to blow them up again. I always have pain as well and I don't think it will go away:(
you can change your diet and avoid dairy and meat.. but specially dairy that changes your hormones...
I have the EXACT SAME ISSUE!! I’m 24. I got it when I was 22. My leg swells up every day, and got told I had chronic DVT and there’s nothing they can do about it Bc of scar tissue.
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
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 🤍
I hope all goes well with your surgery! My thoughts and prayers are with you!!!! ❤
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 feel for you. I have MALS. It’s rare even more over male mid sixties Thanks for sharing
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 😟
Thank you so much for sharing. I think the hardest part of being dx with this condition is how many doctors are not very educated when it comes to may thurner I was constantly running into circles and was never getting a consistent answer/treatment until I met my specialist. My thoughts and prayers are with you and your family. I hope you get the treatment you deserve!!! 🙏
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.
What doctor at nyu do you see for May Thurners??
I KNOW l have May Thurner and have only basic Medicaid.. NYC is clueless about May Thurner.. l had EVERY symptom and have been suffering w all of the above for YEARS! If it wasn't for YOU TUBE, GOOGLE, and my NOT TRUSTING DOCTORS l w be DEAD!
Please tell me if Language is the best. I wish us All the Best ... We are gonna need it! Thanks
I have MTS and PCS. Thanks for sharing your story
Of course I hope you're doing well!
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
Btw, good luck with your surgery and I hope your future will hold more luck.
Peggy Jasar thank you so much I appreciate it
Alexis T U was just gping to sat you can get your own Coumadin machine. I'm so sorry they wont cover ut. Thats so crazy!!! And praying you are having a healthy recovery.
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...
Now after 5 years of accepting thinners and the one-legged compression sock for life... my left foot is going completely numb and has started hurting. I heard about a new specialist named Dr. Kahn at St. Marks and he’s suspecting May-Thurner’s. Today was the first time I had heard about it. I’m pretty stoked at the possibility of improvement now knowing what I have! My inter vascular ultrasound is still a few weeks away... I’m glad to hear I’m not the only old soul out here!!!
Taylor Duncan if you do have may thurner syndrome I do recommend you seeing Dr Patricia Thorpe at st Luke's medical in Phoenix she is a life saver. I have had several doctors in utah screw up things and give me false information so be careful who you talk too.
If it's an old clot you will probably not get the clot removed. You will be dealing with having a clot for life. When clots get old they are more of a scar than a clot. Good luck man.
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.
Please look at dr Kirk d minkus in Arizona he is one of the best highly educated in it. I just got diagnosed he is so knowledgeable. I am going to have a Stent put in by him shortly.
I am so sorry for everything you have gone through! But you are not alone! If you can, please go see Dr. patricia thorpe in scottsdale, she will change your life! I am the healthiest I've ever been and go hiking and to the gym every week. I still get restless legs and pain here and there, but nothing like I used to !
@@sweetgirl88980 I have looked her up and would love to go see her, but I have absolutely no money to travel to her and pay for everything out of pocket. I am at a complete dead end. All doctors now refuse to treat me. They are all telling me to go back to that doctor who did my stent. The one who, and his nurses, have nothing to do with me 🫤 Idk what to do. I'm currently having a really bad reaction to that second blood thinner and I feel sick and much more tired and fatigued than usual. But I can't get off of it.
@@sweetgirl88980 It seems my comment did not go through. 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.
@@sweetgirl88980 It seems my comment is not posting for some reason. Let me try this again. 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 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 am adapting to it now that it's been a little over two years but it is definitely something I'm learning to accept. I have 6 stents now and have had 6 surgeries. I saw my specialist and I am cleared for 2019 it will be the first time since November of 2016 that I wont have to have a surgery. I hope you're doing well.!
@@sweetgirl88980 I'm doing okay. I still have a clot. I've since attempted to have it removed, but it's to old to get past. It'll always be with me. It's progressively gotten worse over the years, it started when I was 23 and I'm now 36. I actually went to Flagstaff, AZ to try to get the clot removed with no luck. I originally got diagnosed in Ogden, UT. I hope you are doing well. I currently live in Walla Walla, WA.
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).
was diagnosed with all of those in like 4 months, feel like a nightmare.
yamete kudasai that is insane I am so sorry to hear that! I have never heard of blood cancer. I wish you the best!!!!!! Take care of yourself
I saw your doctor this week. I have new hope. Thank you.
Anna
Anna Lee I am so happy for you!!! You are very welcome ❤
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 should add that I will forever take a daily low-dose aspirin. That's all I was told to take.
Wow crazy story I'm glad they were finally able to diagnose you!!! I've been told many times I need to do an update video but I dont know if I should. There are people who believe in what they think is the "right treatment" I've have a few other surgeries since this video and now have 6 stents. It's definitely a long journey and will forever be my life. I hope you continue doing great!!! Thank you for sharing! @Pamela and Joseph Safago
You are so lucky! I had May Thurners Syndrome and Pelvic congestion syndrome with prior DVT’s and PE. It May Thurner’s is left untreated for a long period of time, then it will cause the pelvic congestive syndrome. I was always having leg pain, swelling, low back pain and Pelvic Pain that was out of sight! They ended up putting 11 coils in my pelvis. The coils are when they want to block off the veins rather than put a stent in them to keep the blood flowing. Usually it’s when the veins are not good enough to save from clotting, so they put a coil in it and burn the ends closed so the blood will have no way of using that pathway again. The blood flow will have to find other veins in which to carry the blood.
I had a HORRIBLE time after the coils were placed. My ovaries didn’t feel like chronic abscessed teeth anymore, but I still had general overall pain in the pelvis and always felt weak and faint. 2plus years later, after being in the hospital with COVID, they realized the doctor never treated they may Thurner‘s… Only the pelvic congestion disorder. The doctor Immediately went in and put a stent in the left iliac vein. Afterward, the pain was everywhere throughout my body! I woke up from the anesthesia, shaking as if I was going into shock. The doctor had already left and the nurses didn’t know what to do, so they just left me like that. I asked them to get me many blankets to try to warm my body down because I was going into shock. Thank God I have a medical background! It’s been three or five months now. After the surgery, the pain went up my left leg and across my low back. He had told me that it would have symptoms of sciatica and it did! I had been diagnosed with that before, but now realized it was more from the iliac vein then from the sciatic nerve. Not only was the pain in my back and legs, but I had arthritis throughout my entire body. I couldn’t make a fist with my hands it was so bad and it even went to my feet like plantar fasciitis. Every old injury I had ever had was hurting on the scale as a 10! The pain isn’t as bad now as it was in the arthritis is getting better even though it’s still there. I can’t stand for very long or even sit because my back hurts too bad. I have absolutely zero energy and that is not getting better at all! I also feel bloated a lot and nauseated. The fatigue has gotten so bad that I only get up to go to the bathroom and occasionally grab something in the kitchen… Then I’m right back to bed. Every now and then I think I can get up, so I do and then I pay for it. Then I’m back down completely for days after I do anything. I’m just wondering if anyone else has felt this extreme fatigue or after effects? BTW, in case you didn’t know, they also offer physical therapy for pelvic congestive syndrome if you have someone in your area that has been trained. It can definitely affect your vaginal muscles, so they go in and try to release the muscles from within. It doesn’t hurt, but unfortunately my physical therapy was a complete failure also, so I’m not normal in that area either! They waited way too long with everything on me and then did the surgeries backward. They should have repaired the iliac vein first and then go onto the pelvis… But I was bleeding so much in The pelvis, they did the pelvic congestion syndrome first and then forgot about the iliac vein until I get a different doctor a few years later. I really wonder if anyone knows what they’re doing with this stuff!
Hi. I was diagnosed with may Thurber a few weeks ago. I did a procedure yesterday where they put a balloon in my vein.
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.
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.
Have you seen a doctor for it?
@@sweetgirl88980 not yet. Just put it together this week!
I wish you the best of luck and hopefully you can figure out what's going on!
@@sweetgirl88980 YOU,are a sweetheart. Thank you. And I wish you continued good health!XO
Yep,May Thurner.
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!
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 ♥️
Where is your father located? My specialist is amazing!!! She may be able to help.
Alexis T we live in Chicago
I dont know if you guys are able to travel or not. But my specialist is located in Phoenix Arizona her name is Dr. Patricia Thorpe. Shes located at ST Lukes hospital. I highly recommend looking into her. Even looking her up online. She litterly improved my quality of life. She specializes in may thurner and knows her stuff. My biggest regret was going to several doctors who didnt know what they were doing and getting surgeries that didnt help. Then having more surgeries so she could fix what they did.
Alexis T thanks for the advice, we aren’t able to travel but we will see where he ends up he has been to about 5 different doctors but his clot is so hard that it’s hard to get out but thank you
@@sweetgirl88980 Oh my gosh, I'm so glad to see you mention Dr. Thorpe because my daughter and I are both having another surgery for additional stents done by her! My daughter had a pulmonary embolism at 21, and we both had stents put in the following week. Within nine months, we're back at square one. We've now met with Dr. Thorpe and will be having surgery within the next couple months, after she returns from vacation.
Hi sorry to hear about your pain and suffering it really sucks I know what it's like having blood clots and thinking i might die from them when I found out about my clots they asked me if I wanted to make my last will and that was scary luckily my clots didn't travel it stood where it was at. great video by the way thanks for the info.. im 32/m I recently got diagnosed with May thurner had blood clots for 2 years DVT currently taking Coumadin for the rest of my life. and just had the procedure done with stent yesterday and was wondering if you had back pain after the surgery also did the stent help any?
Taylor Merino hello! I'm sorry to hear about that. I always have back pain and pain in my abdomen. I dont know if the pain is from my stents or because I've always had a bad back. I currently have 6 stents now I have 4 in my left iliac vein and 2 in my right iliac vein . The stents have helped from keeping me clotting but there is other pain that comes with them.!
Got it thanks for the reply. I got two stents put in my left iliac vein the other day and When they was placing the stents I felt pain in my back when they placed them kind of weird Not sure if that’s normal hope this pain goes away soon.... anyways hope you feel better and wish you all the best
Depending on where the stents are placed I'm sure you'll have back pain I had really bad back pain after my 4th and 5th stent were placed. I was told they were laying on my spine and that tissue would develop and make my back not hurt as much
My daughter just was diagnosed with it ! She is 16 years old
I have had swollen leg for 15 + years and docs were not able to diagnose..
Wow I would like an update!
I have thought about doing one. I have had a lot happen. If you think its beneficial I can totally do one!
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 really wish i could donate as living in the Uk it is just baffling how US citizens manage long term health care costs its really unfair as its no ones fault to be ill and need care. I reccomend moving to a country with an adequate and free for all health care system, the usa has no excuses when it comes to this. Perhaps it is the greatest country in the world if u never need a doctor and are white and privaliged but u only know what u know and are used to i suppose. The rarest condition you have is clearly how beautiful you are and beaitiful you are.
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 😭
I hope everything works out for you ! I am so sorry you're so young and are going through this. I definitely recommend doing your research and finding good dvt doctors. Some doctors say they have experience with may thurner syndrome but have only had like 50 to 100 patients with it. Look out for yourself and your well being. Dont be scared, I am here if you have any questions.
@@sweetgirl88980 Thank you so muchh ♥️
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.
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
They didn't put you on blood thinners or anything ): I'm so sorry your going through all of that
I do have May Thurner's myself, and I'm only thirteen, and in so I know what you've gone through, just not to that extent.. Although I'm very glad that the medical people are more officiant nowadays.. Since, I have a Stent in my belly button and was put on lovinox for three months.. I know how it feels. Although I am sorry for the troubles and pain you've went through.. In Seattle children's, I was their 3-4th patient with this syndrome, so I'm guessing it's getting common..
Edit: Last week I had another blood clot in my right leg, but it wasnt diagnosed from may thurners. So, I had a stent in my left leg, right? Well, scar tissue grew around the metal mesh, which is normal, but it grew and extended up and into my right iliac vein. And this happened while I was on baby aspirin therapy(also my left stent moved upward a little bit). So, the scar tissue actually caused another major blood clot in my right leg from my calf up to my upper right hip. At first, I thought I had bursitis, when I went to my doctor she said I did have bursitis, and if it didn't get better within two weeks I'd get a steroid shot. It didn't get better, I noticed some discoloration and swelling in my right leg, but my mom and gramma didn't believe me. Saturday morning we went to children's hospital in Seattle hoping that they'd say I'm fine and it'd be a quick in and out appointment. Later, they tried placing an IV into my left hand twice until they finally found a spot(still have the bruises). Then they put another IV in my right hand(which became useless). Later I was put into surgery and woke up with a third IV underneath my knee, and started pumping clot buster into my right leg. Then on Monday I had my second surgery, in which they placed another stent in my right vein, so now they're in a "Y" shape. Tuesday afternoon I was able to go home, and Wednesday I went to first day of eighth grade. I've decided to take warfarin this time, but last week I bridged over with lovenox. I don't really know how rare this condition is, but it's rare enough that it's not on Google, and my doctor had to ask his colleagues what to do. I can't have a lot of vitamin K, but I only eat it if my iron levels are too high. So I mean, if anyone else is expirencing this as well, now you know you aren't alone.
Edit 2: will have my fourteenth brithday next month on the 9th
Lulukazie 135 in utah where I am from I'm the youngest my doctors have seen! I'm sorry you're 13 with this condition because I wouldnt wish it upon anyone. I have 5 stents four on my left and one on my right
Alexis T ouchie! Yea, I don't want anymore young and elderly souls being diagnosed with this.. It is painful but in the end, it's worth it.. I'm almost done with my last batch of lovinox.. Just yesterday morning my girl scout troop later(gave me the shot) and actually made me bleed. I'm not surprised though, since I get bruised a lot..
But y'know, it's okay. Besides the age difference, I believe that most girls around the world deal with similar issues. Like having this syndrome, painful cramps, being all artsie crafty, doing this and that.. We're similar but different..
But at least we aren't alone ^¬^ Although from what the doctors here in WA state have been saying, this syndrome is more common in women rather then men because of how our veins are created. It's pretty interesting.
Lulukazie 135 yeah I did the lovenox shots for a little bit. But I am now on cummidon for life and I have to wear compression socks 24/7
Excuse the horrible quality I had to do this on my phone and it did not look as good as I thought it would. Here's the link to my go fund me Hi everyone, please click here to support my GoFundMe campaign,Blood clot Survivor
www.gofundme.com/alexis-bloodclots-surgeries?pc=sms_db_co2876_v1&rcid=83335b1d610d4f8a8bc2ec1ab1318078
I just donated. I’m in Australia and literally just got out of hospital being treated for May Thurners. It came on like yours did - pain in the left hip, then my left leg swelled up. I’ve been very lucky, I had specialist vascular surgeons and haematologists looking after me from the outset and they took the course of action your specialist took (catheter up the leg, stuff pumped in to dissolve the clots, then a stent). I’m now on eliquis and will be in a thigh-high compression stocking for the next 2 years. I am SO sorry it took you so long to get the treatment you need - what you were initially put through is horrific, I cried for you. You are a STRONG little lady! Xx
Sandy Hanna that's so crazy. It makes me sad hearing other people's stories I wish they'd have a better outcome. when it comes to doctors being knowledgeable about this condition. I hope the best for you !!!! stay strong (: thanks for the comment and thank you so much for the donation I really appreciate it!
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!
I highly recommend seeing my specialist in Arizona. I had two doctors in Utah work on me and one of them really messed up my stents. I met a girl in Utah who had may thurner and she told me about this specialist because she had doctors work on her in utah as well and they messed her up. I went and saw her and it was the best decision I ever made. She has changed my quality of life and they are VERY thorough ultrasounds are usually a hour long they test all your factors. The doctors in utah are not reliable I needed my tonsils out and they couldnt even bridge me correctly for me to get the surgery done. I am so sorry you have to deal with all of this.
Hi alexis T,
Im braziliam and studyng by myself about this syndrome because show in exame but the doctos even dont know what is!!!
And im reading the coments and find here you saying about tonsils?! What is!? What you mean about this statment?!
Sorry about my english!!!
Hope we win this unknown battle!!
@@libraobsession Nancy, she was just saying that the doctors are bad where she is. Not only were they bad with her pelvic congestion syndrome and the stents, but her others doctors were bad with diagnosing and treating her tonsils, as well. The tonsil Condition had nothing to do with the May Turner’s condition. I have been told that the majority of doctors don’t even know what this condition is, so if your doctors are saying that… You need to find new doctors. I had 2 laparoscopic surgeries, where I was filled with blood in the pelvis, but they didn’t understand why. It was the next doctor that did a surgery and found it while he was inside my body and took a picture of it so that no one could deny it. The doctors can do a venogram to find out if it needs a stent.
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.
Hello, I would love to talk to them. I am not super knowledgeable when it comes to this condition but I have been dealing with it for 3 years now and have gone through 6 surgeries. I do not have facebook. But I do have an e mail or Instagram? My Instagram is littlelex88980
@@sweetgirl88980 could you please email let me know your email adress ?, because I tried look for your Instagram page but I get an error message.
@@chetanrs I deleted my instagram, its alexisterronez@hotmail.com
Hi! I’m along with you & a few other viewers. I have May-Thurner, had a DVT at 21, have 3 stents places on my left side, on Warfarin for life (did you have genetic clotting tests done with a hematologist?), own my INR machine. Currently I’m struggling to find if I can get pregnant (I’m 33... been dealing with the effects of this for a decade now). I get mixed messages & have seen so many specialists, my head is spinning! If anyone has info on this, please let me know!
Allison Liska I have had several genetic blood tests done and all my factors tested and I was negative on everything. Theres a pregnancy group for may thurners syndrome on fb I recommend joining that. You do have to go on lovenox while pregnant so you'll have to stop your warfarin. I just found out I'll have to have balloon dilation yearly for several years due to two small stents that were placed. I've always wondered about pregnancy but have been unsure because I have 5 stents and one of them are on my right side as well. Plus surgery yearly idk.
@Allison Liska did you get these clotting factors blood tests done ? Could you let me know the name of these tests if you have ?
Thanks
@@chetanrs I had all the things Alexis had and they found that I also had factor V Leiden rare blood clotting disorder. So that would be one of the blood clotting factors you could ask about. Before I was ever diagnosed and treated, I had a few miscarriages, but was also able to have 2 live births. My mother had the same blood clotting disorder with four children, but had a stroke with the fourth one. Medical science has come so far, I would imagine with clothes watch you could get pregnant and have babies with these conditions. Always a risk… But with a close watch, I would think It’s possible
@@lindacarney9008 thank you
I have MTS . And I'm 15 years old. I found this one month ago.
I am sorry your are going through this and I wish you the best. My video is a few years old. I didn't mean I was the youngest person in the world with this condition but I AM the youngest my doctors in utah have seen. I'll probably post an update video soon
@@sweetgirl88980 your video help me to learn more about MTS ,thank you.
I have this
Could you tell me what doctor you see in Arizona? The specialist?
Dr patricia thorpe scottsdale arizona ❤ sorry for the late response
I just found a doctor (neurosurgeon) last week who put a name to what I have. I’ve been asking vein doctors and primary cares for years...why does my left foot and leg swell? I’m not sure where to go from here. I live in Southern Arizona. Can you tell me where you are going for treatment.?
Anna
Anna Lee if you have dvt's I recommend you to Dr. Patricia Thorpe she works at st luked medical center! Give them a call and see if she can take a look at you.!
Do you have a doctor in Phoenix that did your stents?
Anna Lee Dr. Thorpe placed 3 of my stents
Shes in phoenix Arizona
I’m sorry...... I misunderstood. I thought she was just a radiologist. I am a 2 hour drive from her office. I will call tomorrow for an appointment. Thank you so much for this information. I’m hopeful to finally get answers about the pain and swelling I’ve experienced for years. Thank God...no DVT or blood clots yet.
Do you must to take anticoagulants for life so that blood clots do not form on the stent?
I will be on cummidon for life !
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.
Were you stented before you got pregnant or after? I currently have 6 stents and I'm 24 I want to get pregnant but I have to get off my cummidon and go on Lovonox. I'm sorry thats happened to you. It sounds crazy and sometimes things happen so fast its hard to process it all at once. I hope your doing well now I couldn't imagine!
How many stents do you currently have?
Who is the doctor in Arizona? Thanks!
Dr Patricia thorpe
@@sweetgirl88980 - Thank you!!
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 am unable to have kids due to all my stents
You aren't one of the youngest people to have this. It's a congenital defect, people who have it are born with it. It does not become sypmtomatic in most people who have it until post-adolescents or later. It is rare and hard to diagnose, and you are in the younger age range of those diagnosed. Most diagnosis are post-mortem due to a missed diagnosis. I have May-Thurner along with clotting factors and have been dealing with this for 14 years (since I was 20, when I was first diagnosed with a DVT). It will often feel like you have a clot when you do to due to scar tissue and decrease profusion. Stents can be effective but often fail. May-Thurner is due to compression of the LEFT iliac vein from the RIGHT iliac artery,. Arterial tissue is musculature in nature so it can squeeze/compress. Veins work on a system of valves and rely on the muscle pump of arteries. Therefore, even if you have a stent, the artery on top of it can still compress it. Also of note, the longer of stent that is needed, the weaker it is. Imagine venous stents are much like chinese finger traps in the way they are designed. Imagine interlocking multiple finger traps...they are each weak at the center and would be at the junction of one to another. It's not uncommon to have a venous stent fail due to compression from the overlying vein. If you have a clot with May-Thurner Syndrome, you should be on prophylactic anti-coagulation therapy of some sort for the rest of your life (either for the stents themselves (can be discontinued if stents are removed) or just to prevent clots). The type of drug therapy depends on the individual, if only the condition and stents are involved then something like Plavix/eloquis may be adequate. In my case. this does not prevent clots from clotting factors so other forms of anti-coagulation therapy are necessary. This information is based on my personal experience, research papers I have done as a RN, and consultations with vascular surgeons and hemotologist/oncologists.
SRenee P15 I am one of the youngest people to have it in Utah. none of my doctors in Utah have had a patient as young as I am. No I'm not the youngest in the world. I have heard of people being diagnosed younger than me. I said that I wasn't a expert on this condition and I am still learning but I also have a specialist who has devoted her life to this syndrome and I have learned enough to understand it. This is my story and not all stories are the same.
SRenee P15 My 8 year old daughter was diagnosed with an occluded femoral vein due to DVT and has since been additionally diagnosed with May Thurner Syndrome. We are currently in the steps of consulting with a paeds vascular surgeon. It’s interesting to read the info you posted on stenting. My daughters hematologist said they will likely not stent her. She did 6 months of enoxaparin injections. The clot dissolved enough to allow the blood flow to improve but it’s chronic now as it’s turned into scar tissue. This has been a crazy experience. I have been dealing with world experts in the field of kids clots and no one we’ve seen has had a child this young present with a dvt due to may thurner.
what hospital was this???...they just cut you no anestisia???....crazy.
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?
I was told it had to do with the anatomy of my body my arteries were pushing down on my iliac veins. Theres a lot of controversy on what causes it. Also people could have blood factor where you're at a higher risk of clotting. I have had all my factors tested and I was negative. I also was tested for a gene mutation that I was negative for as well I know birth control and stuff like that could put you at higher risk for clotting. But I wasnt on that either. So my doctor claims it's my anatomy. Which I do have a lot of back / hip problems. (Scoliosis) sorry I'm not much help.
@@sweetgirl88980 could you please mention the names of these Factors that you talk about. Also, what is the name of Gene test that you got done.
I have a leg length discrepancy (right leg is shorter due to legg-calve-perthes disease and subsequent hip operation when young). I had a forward tilted pelvis for a while, recently improved but i suspect i have MTS and MTS due to the amount of narrowing in the two veins.
Guess you found out the hard way that you're supposed to be on blood thinners for one-year post stent placement. And its NOT JUST ANATOMY it has to do with your blood clotting factors also. I found out that I also had a blood clotting disorder called FACTOR V LEIDEN. I was lucky to have world-class doctors at the MAYO CLINIC in Rochester MN. Doctors do not know how fricken painful may thurners is! It's completely ridiculous. This happens more in women ages 25 to 45... NEVER TRUST YOUR DOCTORS! ALWAYS TRUST YOUR BODY first! Thrombophelia is the specialty are to deal with this stuff! Poor baby girl! I know your pain!!!
Mara Chaykin ive been tested for every blood clotting factor many times and they still cant find anything besides my anatomy!!! Im sorry to hear you went through it and I 100 percent agree doctors dont know how painful it is having this condition!!!
How are you doing now? I’m getting two stents on Wednesday feeling a bit nervous .
I am doing pretty good I have 6 stents now. I have way more energy. I feel like the 6th stent kinda gave me my life back I can go hiking now and go back to things I use to love. I still get pain and achyness but that is normal. Good luck with your stents on Wednesday! I'll be praying for you!!
Alexis T I’m glad to hear you’re feeling better, thank you very much this makes me feel better.
Of course! If you have any questions down the road feel free to message me on here and I will answer them! I have thought about doing an update video but im not sure who would really watch it haha but if you want me to do an update video into detail let me know
Alexis T That would be awesome! Thank you I hope I don’t get you tired with my questions lol.
Alexis T hello Alexis how did you feel after your first stent? I’m having back pain I was wondering if you walked a lot after the procedure?
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
Are you the person who contacted me on Instagram?
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.