I have May Thurner, got out of the CVICU after a week and three surgeries for a "very extensive bloodclot". Thank goodness after days of the ultrasound machine, blood thinners, all types of meds, a stent was put in!
Hi Kendra how are you going now after stent? Im scared to have stent and hoping to have kindey auto transplant instead as if worries about stent migration. Thankyou
I have May-Thurner. Just diagnosed last year after 6 months of not being able to walk due to excruciating pain and leg swelling. My vein was completely closed. Shortly after surgery to put a stent in, I noticed a small bump under the incision site. It's not scar tissue. It doesn't feel like it and it doesn't break up and go away when I massage it. It gets worse. It has now been a year and the bump has grown and spread up and down in a line and is very very tender and very very painful. I have been wearing loose baggy clothing to keep pressure off of it, because any pressure causes excruciating pain in that spot, the surrounding area, and down my left leg. I'm at the point where I can't go any baggier without just being naked. I have been dealing with a lot of swelling and some discoloration in my left leg. I have to keep my left leg propped up 24/7 and within the past month, I have been limping horribly and not quite bending my knee anymore just like with my May Thurner before my stent. My original doctor and nurses blew me off and refused to do anything. Other doctors I have seen either say it's nothing or do tests and say they don't see anything. My current doctor literally wrote in her notes on my file that, "I can barely appreciate her focusing on this bump." Like.....I am in so much pain and it's getting worse and worse. What started as a small bump with little pain is now big and spread up and down by my groin area and is causing me so much misery. Idk what it is or what to do. I came across pelvic congestion syndrome and I'm wondering if that may possibly be it, but I'm not sure.
I was just diagnosed with May Thurner syndrome. I didn't have any symptoms at all. It was just caught incidentally for a CT scan of my pancreas. The pancreas had a cyst that was incidentally caught by a lower back ct scan.
Great job. Is it possible for the compression caused by May-Thurner syndrome to occur more when someone is seated than standing or lying flat? My left leg swells considerably more when I am seated at my desk than standing or lying flat. All other tests have been done except the intravenous ultrasound and when I ask about being seated for verification, I am looked at like a quack.
Yes this is possible! With Mays please try to limit your sitting time (working, driving, etc), move your limbs regularly throughout the day to keep that circulation going ❤ best wishes to you
I got diagnosed with NCS around a year ago. My doctor said it was more like a “phenomenon” than a syndrome, I think because it doesn’t always cause serious symptoms. I wish I knew if NCS was what’s causing some of the health issues I’m currently dealing with 😕
Same thing happen to me,my doctor put it off,but now I'm still having pain all on the left side,including irregular heartbeat. So I go today for another CT scan,but I also told my doctor that I need a pelvic ct tooo. It's sad we have to push doctors to do their job. I'm tired of being out off and they tend to do that to women alot. I hope you feel better. I feel ill everyday myself,I know what you're going through
so sorry you are going thru that I have nutcracker too along with smas, pots, and pelvic pain congestion... I have a Nephrostomy in my kidney to bypass the compression and save my kidney further damage. you need to find a good urinary doctor who knows about the syndrome
Can May Thurner cause chest pain or increasing blood pressure in the arms and hands too? I am diagnosed with PCS and May Thurner with an 57% compression and venous insufficiency in my legs. I also have protruding veins in my arms and hands that all nurses and phlebotomists struggle to work with. Do the doctors normally embolize the veins in legs and pelvis before stenting the iliac? Why are the doctors all seemingly disagreeing about the best way to treat this???? I'm so frustrated!
Wow.. I’m only 19 and had to be hospitalized for a month and had DVT had a pulmonary infarct and now with Matt burners syndrome along with pelvic congestion.. soon to be getting a stent :)
I feel like I have the nutcracker thing... I piss blood around every 10 years... im on my third time of doing this, and no doctor can figure it out. You don't pee blood for "no reason"
Embolization is risky. If the stent ever migrates, it can literally be unrecoverable and thus be stuck inside of you for life! Just something to consider.
I am in Canada so I had a clot around the iliac. Clot is gone but leg thigh is swollen as well my left pelvic area. I also have neuropathy and now veins are bulging in pelvic area. All normal they say.
It sucks, almost died. Now I have a new lease on life after a stent. Only a lil scar tissue in my veins. I couldnt straighten my leg past a 90 degree angle my clot was so bad.
yamete kudasai that is unfortunate. I have been having a lot of pain this year and am on the long road to getting a diagnosis. My doctor last week mentioned that I may want to speak to an obgyn about PCS or May Thurner. And they did a renal scan (I think) to look for compressions. I don’t have a follow up until 4 weeks so I am left wondering what they found. That’s how I found myself here. How are you doing now - any treatments? How did you get diagnosed?
@@blackeneddove it was.. And thank you! Yes, the stent basically fixes May Thurner. So luckily I dont have to stay on blood thinners. I will be monitored a lot though.
I really think I have this. Kinda trippin. *Update- I did. Do. May Thurner. One stent left iliac vein. About to get another, 2 yrs later, on the other side.
Fazy faizan Visit your doctor first. Tell him about your symptoms, and consider asking him for a referral to a pelvic floor specialist. It could be you're not suffering from Nutcracker syndrome but from a tight pelvic floor which constricts the veins that run through them. If that doesn't work then you can consider asking for a referral to get a CT scan, X-Ray or MRI scan done to determine wether or not you're suffering from Nutcracker syndrome. Note that with these scans it is most likely that they will have to administer an intravenous contrast agent like radioactive iodine to get a clear picture. I'm not sure if this would be the case with a MRI by the way, you will have to ask the doctor about this.
I have May Thurner, got out of the CVICU after a week and three surgeries for a "very extensive bloodclot". Thank goodness after days of the ultrasound machine, blood thinners, all types of meds, a stent was put in!
Hi Kendra how are you going now after stent? Im scared to have stent and hoping to have kindey auto transplant instead as if worries about stent migration. Thankyou
I have May-Thurner. Just diagnosed last year after 6 months of not being able to walk due to excruciating pain and leg swelling. My vein was completely closed. Shortly after surgery to put a stent in, I noticed a small bump under the incision site. It's not scar tissue. It doesn't feel like it and it doesn't break up and go away when I massage it. It gets worse. It has now been a year and the bump has grown and spread up and down in a line and is very very tender and very very painful. I have been wearing loose baggy clothing to keep pressure off of it, because any pressure causes excruciating pain in that spot, the surrounding area, and down my left leg. I'm at the point where I can't go any baggier without just being naked. I have been dealing with a lot of swelling and some discoloration in my left leg. I have to keep my left leg propped up 24/7 and within the past month, I have been limping horribly and not quite bending my knee anymore just like with my May Thurner before my stent.
My original doctor and nurses blew me off and refused to do anything. Other doctors I have seen either say it's nothing or do tests and say they don't see anything. My current doctor literally wrote in her notes on my file that, "I can barely appreciate her focusing on this bump." Like.....I am in so much pain and it's getting worse and worse. What started as a small bump with little pain is now big and spread up and down by my groin area and is causing me so much misery. Idk what it is or what to do. I came across pelvic congestion syndrome and I'm wondering if that may possibly be it, but I'm not sure.
I was just diagnosed with May Thurner syndrome. I didn't have any symptoms at all. It was just caught incidentally for a CT scan of my pancreas. The pancreas had a cyst that was incidentally caught by a lower back ct scan.
ممكن اعرف ماذا فعلت أنا ايضا تشخصت هذه المتلازمه الآن بعد معانتي سنتين 😢
Outstanding explanations
Great job. Is it possible for the compression caused by May-Thurner syndrome to occur more when someone is seated than standing or lying flat? My left leg swells considerably more when I am seated at my desk than standing or lying flat. All other tests have been done except the intravenous ultrasound and when I ask about being seated for verification, I am looked at like a quack.
Yes this is possible! With Mays please try to limit your sitting time (working, driving, etc), move your limbs regularly throughout the day to keep that circulation going ❤ best wishes to you
I got diagnosed with NCS around a year ago. My doctor said it was more like a “phenomenon” than a syndrome, I think because it doesn’t always cause serious symptoms. I wish I knew if NCS was what’s causing some of the health issues I’m currently dealing with 😕
Same thing happen to me,my doctor put it off,but now I'm still having pain all on the left side,including irregular heartbeat. So I go today for another CT scan,but I also told my doctor that I need a pelvic ct tooo. It's sad we have to push doctors to do their job. I'm tired of being out off and they tend to do that to women alot. I hope you feel better. I feel ill everyday myself,I know what you're going through
so sorry you are going thru that I have nutcracker too along with smas, pots, and pelvic pain congestion... I have a Nephrostomy in my kidney to bypass the compression and save my kidney further damage. you need to find a good urinary doctor who knows about the syndrome
Do you get veins on you hip to your stomach? I have under my butt down my legs and hips.
Keep doing research
Can May Thurner cause chest pain or increasing blood pressure in the arms and hands too?
I am diagnosed with PCS and May Thurner with an 57% compression and venous insufficiency in my legs.
I also have protruding veins in my arms and hands that all nurses and phlebotomists struggle to work with.
Do the doctors normally embolize the veins in legs and pelvis before stenting the iliac?
Why are the doctors all seemingly disagreeing about the best way to treat this????
I'm so frustrated!
Wow.. I’m only 19 and had to be hospitalized for a month and had DVT had a pulmonary infarct and now with Matt burners syndrome along with pelvic congestion.. soon to be getting a stent :)
I hadalmost the same thing, a pelvic vei thrombosis. If you ever want to talk, I'm here!
@@kelleykalomiris2231how did you know you have thrombosis,what were symptoms and how did they treat it
@@pakeezamalik8158 I could not lift my leg and it was extremely painful. I also had a fever.
Good luck with your stent surgery. Hope you feel better then.😊
I feel like I have the nutcracker thing... I piss blood around every 10 years... im on my third time of doing this, and no doctor can figure it out. You don't pee blood for "no reason"
Agree,doctors put that off alot. Force them to take more scans or test. And if you have pain somewhere don't ignore it.
Embolization is risky. If the stent ever migrates, it can literally be unrecoverable and thus be stuck inside of you for life! Just something to consider.
1202 Program Alarm but that’s a relatively small thing in comparison that you’re at a high risk for a DVT if it isn’t treated.
@@lifeisgoodinthesouth210 exactly
I am in Canada so I had a clot around the iliac. Clot is gone but leg thigh is swollen as well my left pelvic area. I also have neuropathy and now veins are bulging in pelvic area. All normal they say.
I have pcs and I am in the worst pain ever.
can a stroke patient being in wheelchair cause May Thurner syndrome ? in left leg (affected leg )
wanna hear a sad story? i have PV, nutcracker syndrome and may thurner syndrome .
minha filha tb tem
It sucks, almost died. Now I have a new lease on life after a stent. Only a lil scar tissue in my veins. I couldnt straighten my leg past a 90 degree angle my clot was so bad.
Kendra Strange that’s awful. Glad it sounds like things are getting better! Did you have a stent for May Thurner Syndrome?
yamete kudasai that is unfortunate. I have been having a lot of pain this year and am on the long road to getting a diagnosis. My doctor last week mentioned that I may want to speak to an obgyn about PCS or May Thurner. And they did a renal scan (I think) to look for compressions. I don’t have a follow up until 4 weeks so I am left wondering what they found. That’s how I found myself here. How are you doing now - any treatments? How did you get diagnosed?
@@blackeneddove it was.. And thank you! Yes, the stent basically fixes May Thurner. So luckily I dont have to stay on blood thinners. I will be monitored a lot though.
Is this operation for the kidney may Thurner operation safe? So it’s much safe as a dental operation? Thanks
I really think I have this. Kinda trippin.
*Update- I did. Do.
May Thurner.
One stent left iliac vein.
About to get another, 2 yrs later, on the other side.
How are you doing now??
how did u know?
Do you have one on MALS?
thanks for the video. I have nutcracker syndrome
How did you deal with NCS ?
@@jaguparmar6857 hi
I m female I have da same issue pelvic congestion syndrome wat I do help me please
Natural ways to heal anyone ?
I dont know... but I m looking a way to heal before I need the operation.
you can't naturally uncross your veins. not something worth waiting on
i m female i have da same issue pelvic congection wat i do help me please
Fazy faizan Visit your doctor first. Tell him about your symptoms, and consider asking him for a referral to a pelvic floor specialist. It could be you're not suffering from Nutcracker syndrome but from a tight pelvic floor which constricts the veins that run through them. If that doesn't work then you can consider asking for a referral to get a CT scan, X-Ray or MRI scan done to determine wether or not you're suffering from Nutcracker syndrome. Note that with these scans it is most likely that they will have to administer an intravenous contrast agent like radioactive iodine to get a clear picture. I'm not sure if this would be the case with a MRI by the way, you will have to ask the doctor about this.
As vrea în romana
So luck to have both 🤣🤣 I had a CT scan and internal ultra sound
Me too!
@@Tytinamskizzydid u get help
I am still in treatment. So far I have 8 coils in place for PCS
In french pleazzzzzz 😥😥