I have factor 5 Leiden and have had 3-4 DVTs in the same leg with PEs too since 2016. I’ve been on Rivoroxiban, warfarin and most recently Apixaban. I still got DVTs on Warfarin. My last one was April 2024 and is still swollen and really hurts now, with, burning, cramping achy and tingling pain. The clot was in my upper leg above the knee and is still swollen I had an Ultrasound recently and while the clot seems to have gone, there’s a lot of scarring to the veins. PTS wasn’t mentioned in the constitution. I looked up “pain after DVT” and one of the things that came up was PTS. I might make a doctors appointment and ask if it’s possible that I have this.
I have suffered from dvts in my legs,arms,neck and ultimately in my lungs. I've had PEs at least 3xs about 10yrs ago. I've been in the hospital every year since due to faux clot symptoms EVERY TIME the weather changes. I knew this was a disorder but never could fine a doctor that understood my symptoms. Now I have a name PTS. I get pain in my neck,arms and chest. I get extremely fatigued, dizzy and can't move. I haven't been able to work as a result. Where can I get help?
I have factor 5 Leiden and have had 3-4 DVTs in the same leg since 2016. I’ve been on Rivoroxiban, warfarin and most recently Apixaban. I still got DVTs on Warfarin. My last one was April 2024 and is still swollen and really hurts now, with, burning, cramping achy and tingling pain. The clot was in my upper leg above the knee and is still swollen I had an Ultrasound recently and while the clot seems to have gone, there’s a lot of scarring to the veins. PTS wasn’t mentioned in the constitution. I looked up “pain after DVT” and one of the things that came up was PTS. I might make a doctors appointment and ask if it’s possible that I have this.
Thank you,my daughter lives in England and has factor 5 she developed a blood clot just below her groin even though she was on wayfaring. After 5 .months the clot has gone but she has scaring on the vein,inflammation of her thigh and pain. This has helped her to understand wS has happened.
I'm 55 years old, I have had varicose veins since 19 years old. I'm a pharmacist , I have worked for 30 years as a pharmacist .I wear compression stosckings almost since I started working. My first vein treatment was 24 years ago. I had PE 11 years ago after a vein treatment. Before PE I had most of the PTS symptoms. After PE are worse. At least I haven't had ulcers. My PCP sent me to a vascular specialist. The PA is the one seeing me , the pa did micro phlebectomy on my left leg ( superficial veins 16 incisions ) , I was in pain for more than 2 months, It was painful to walk.I'm still having pain on my legs like before that procedure, my legs are swollen , pa insists that I'm ok that i shouldn't have pain etc. I applied for Disability. The Disability Dr told me I have Post thrombotic syndrome on my left leg, first time I heard that term. Disability dr told me he was not going to approve it because I couldn't tell him in which leg I had the DVT that caused the PE. The Disability psychiatrist says I can work in an office up to 8 hours a day. So here I am listening to this video on bed with pain, the only thing that relives my pain is elevate my legs. I forgot to say that I mentioned to the Cardiologist pa Post Thrombotic Syndrome and she said " I don't what that is" the pa told me she is 100% sure what I have is a pinch nerve and she gave a referral for an MRI. My PCP already sent me to a neurologist and all the tests came negative so no neurological problems, I told that to the PA. I'm so frustrated , I fell like nobody understand my symptoms.
A Cardiologist is not the appropriate specialist for your problem. You need to be seen by Vein Specialist/ Phlebologist, working together with an Interventional Radiologist.
16 years ago, I had a DVT in my right leg. I was on anti-coagulent (injections) for a week and then blood thinners for 6 months. These days I rarely ever have pain, although I do have some aching. My biggest problem is leg swelling. Immediately after the blood clot, I did wear compression stockings. I primarily quit wearing the stockings just because they were so uncomfortable. Anyway, I'm glad to know there is a name for what I'm experiencing.
Same happened to me in my left leg, but 15 years later I developed a small ulcer on the inside of my ankle. It transpired, after I paid for a Duplex Vein Mapping Scan at a specialist vein clinic in London, that I had hidden varicose veins caused through the blood clot. I have since had three procedures at this clinic in 2018 and I have not looked back since, was the best money I ever spent.
Thank you so much for this information !! I'm six weeks out from a pulmonary embolism and still having exercise intolerance, shortness of breath , decreased mobility and the same leg issues in the photos. Now I have a better understanding of why !
I’m suffering from the leg dvt (unprovoked) from the four years when I was 23 year old n now I found a doctor who suggesting me for the stunts n saying it’s PTS, I’m so confused n tired of this.
@@cassielou614 Thanks for sharing hope you are doing well pray and more power to you… im now feels better using just ted stocking and blood thinner advised by senior doctor’s here and thanks God anxiety over calmed and one more thing they told me have to done d dimer after 6 months for not taking more blood thinners, last time my d dimer was high so i continue medicine and yeah im feeling good now everything pretty well execpt of little bit having kidney stones issue,Thanks again and hope you are fine also..
I have a vein doctor who does not appear to be well educated with DVT's. He want to treat some varicose veins I have developed, which I believe are from PTS. Do you think that would be okay or would the risks not be worth it?
I have factor 5 Leiden and have had 3-4 DVTs in the same leg with PEs too since 2016. I’ve been on Rivoroxiban, warfarin and most recently Apixaban.
I still got DVTs on Warfarin. My last one was April 2024 and is still swollen and really hurts now, with, burning, cramping achy and tingling pain. The clot was in my upper leg above the knee and is still swollen
I had an Ultrasound recently and while the clot seems to have gone, there’s a lot of scarring to the veins. PTS wasn’t mentioned in the constitution. I looked up “pain after DVT” and one of the things that came up was PTS. I might make a doctors appointment and ask if it’s possible that I have this.
I have suffered from dvts in my legs,arms,neck and ultimately in my lungs. I've had PEs at least 3xs about 10yrs ago. I've been in the hospital every year since due to faux clot symptoms EVERY TIME the weather changes. I knew this was a disorder but never could fine a doctor that understood my symptoms. Now I have a name PTS. I get pain in my neck,arms and chest. I get extremely fatigued, dizzy and can't move. I haven't been able to work as a result. Where can I get help?
I have factor 5 Leiden and have had 3-4 DVTs in the same leg since 2016. I’ve been on Rivoroxiban, warfarin and most recently Apixaban.
I still got DVTs on Warfarin. My last one was April 2024 and is still swollen and really hurts now, with, burning, cramping achy and tingling pain. The clot was in my upper leg above the knee and is still swollen
I had an Ultrasound recently and while the clot seems to have gone, there’s a lot of scarring to the veins. PTS wasn’t mentioned in the constitution. I looked up “pain after DVT” and one of the things that came up was PTS. I might make a doctors appointment and ask if it’s possible that I have this.
Thank you,my daughter lives in England and has factor 5 she developed a blood clot just below her groin even though she was on wayfaring. After 5 .months the clot has gone but she has scaring on the vein,inflammation of her thigh and pain. This has helped her to understand wS has happened.
I'm 55 years old, I have had varicose veins since 19 years old. I'm a pharmacist , I have worked for 30 years as a pharmacist .I wear compression stosckings almost since I started working. My first vein treatment was 24 years ago. I had PE 11 years ago after a vein treatment. Before PE I had most of the PTS symptoms. After PE are worse. At least I haven't had ulcers. My PCP sent me to a vascular specialist. The PA is the one seeing me , the pa did micro phlebectomy on my left leg ( superficial veins 16 incisions ) , I was in pain for more than 2 months, It was painful to walk.I'm still having pain on my legs like before that procedure, my legs are swollen , pa insists that I'm ok that i shouldn't have pain etc. I applied for Disability. The Disability Dr told me I have Post thrombotic syndrome on my left leg, first time I heard that term. Disability dr told me he was not going to approve it because I couldn't tell him in which leg I had the DVT that caused the PE. The Disability psychiatrist says I can work in an office up to 8 hours a day. So here I am listening to this video on bed with pain, the only thing that relives my pain is elevate my legs.
I forgot to say that I mentioned to the Cardiologist pa Post Thrombotic Syndrome and she said " I don't what that is" the pa told me she is 100% sure what I have is a pinch nerve and she gave a referral for an MRI.
My PCP already sent me to a neurologist and all the tests came negative so no neurological problems, I told that to the PA. I'm so frustrated , I fell like nobody understand my symptoms.
A Cardiologist is not the appropriate specialist for your problem. You need to be seen by Vein Specialist/ Phlebologist, working together with an Interventional Radiologist.
16 years ago, I had a DVT in my right leg. I was on anti-coagulent (injections) for a week and then blood thinners for 6 months. These days I rarely ever have pain, although I do have some aching. My biggest problem is leg swelling. Immediately after the blood clot, I did wear compression stockings. I primarily quit wearing the stockings just because they were so uncomfortable. Anyway, I'm glad to know there is a name for what I'm experiencing.
Same happened to me in my left leg, but 15 years later I developed a small ulcer on the inside of my ankle. It transpired, after I paid for a Duplex Vein Mapping Scan at a specialist vein clinic in London, that I had hidden varicose veins caused through the blood clot. I have since had three procedures at this clinic in 2018 and I have not looked back since, was the best money I ever spent.
Thank you so much for this information !! I'm six weeks out from a pulmonary embolism and still having exercise intolerance, shortness of breath , decreased mobility and the same leg issues in the photos. Now I have a better understanding of why !
I’m suffering from the leg dvt (unprovoked) from the four years when I was 23 year old n now I found a doctor who suggesting me for the stunts n saying it’s PTS, I’m so confused n tired of this.
@@cassielou614 Thanks for sharing hope you are doing well pray and more power to you… im now feels better using just ted stocking and blood thinner advised by senior doctor’s here and thanks God anxiety over calmed and one more thing they told me have to done d dimer after 6 months for not taking more blood thinners, last time my d dimer was high so i continue medicine and yeah im feeling good now everything pretty well execpt of little bit having kidney stones issue,Thanks again and hope you are fine also..
Oh God, this video completely depressed me.
I have a vein doctor who does not appear to be well educated with DVT's. He want to treat some varicose veins I have developed, which I believe are from PTS. Do you think that would be okay or would the risks not be worth it?
I am shocked there is no cure for this,
Very informative! Thank you!
Glad it was helpful!