Post Thrombotic Syndrome

[Spotjack]

Has anyone been diagnosed with this?. Broken my ankle in many places 5 years ago and then had DVT, On Warfarin but recently my leg has swollen twice the size. Nerve tests show a lot of damaged nerves, scan showed chronic scaring from previous DVT, INR is 2.6. PTS is thought to be the cause of the swelling but is worrying as the more I walk on it the worse it gets. Anyone come across this?

[Cliffasaurus]

Hi SJ, yes, I have PTS, I had a 40cm DVT in my R femoral vein 2015, it couldn't be removed so the vein is still blocked. My whole leg swells as the day goes on, more so if I stand or walk a lot. Sometimes my lower leg becomes huge, painful and heavy. I'm supposed to wear a compression stocking every day but I don't as it's so itchy. I tend to wear it if I know I'm going to be on my feet a lot.I'm on Apixaban 5mg twice a day.

I've been told to keep a check on my leg for varicose veins and broken skin which can lead to ulcers. Other than that, I just go on as normal. Any "unusual" swelling though, needs to be checked.

My lower leg after a 12 hour night shift!

[nancye]

Yes. I was diagnosed with post clot syndrome about 10 years ago after dvt/pe. I was on warfarin for a year or so and had to stop because of other conditions. Early this year I had an episode of pain (not as much swelling as you describe) and leg ultrasound showed the scarring, etc. Now on Xeralto.

[tracey13]

Yes I suffer post thrombotic syndrome. I've had three separate DVTs in my right leg. The last DVT I had was the full length of my thigh it took me months to get over this. I was them left with an awful numbing pain in my ankle area. I had various appointments and then was told it was post thrombotic syndrome.

It's been 7 years since my last DVT and it has eased off a lot. I will say it's so much worse in the winter when it's cold I do suffer with the numbing discomfort.

In the early days it was hurrendous I couldn't sleep for the horrible pain.

Tracey

[mrdarcy1]

Hi Spotjack

I've also had 3 dvts all in my right leg, the first one was in the calf.

I never wore my stocking and went on to have 2 more DVTs.

My leg was swollen for over a year and never went down really.

After the thigh DVT I again never wore the full length stocking every day as it was uncomfortable and I was young.

The third one was calf again, by this time, I decided I had to keep the stocking on.

Unfortunately, when I was on my feet, I had this tooth ache pain in the leg, and if I'm on it for more than 5 minutes the pain is awful and I need to lift my leg, and rest it till it stops throbbing. It's a terrible pain and my one piece of advice is "wear your stocking"

My doctor said its PTS,

I'm now on class 3 stocking and I'm up and down all day.

I also have other health problems so it's not just the PTS.

I wish I'd worn the stockings from the start.

I'm on 2 X 5mg of Apixaban.

Good luck with everything

[Redbuns]

post thrombotic syndrome causes much swelling. I had bilateral DVTS of legs, pelvis and IVC. My veins are pretty much completely occluded. I often have very swollen ankles and heck- my whole body is usually swollen because of post thrombotic syndrome. I also have collateral veins in my pelvis/pubic rea that’s protrude about 2 inches outward from my body. I hate them but apparently- without these ugly veins (which look more like elephantiasis) I would not be here to reply to you.

Anyways, don’t hesitate to ask your doctor about your concern- but from my experience- yes- PTS causes a lot of swelling.

I’ve found that my swelling is dependent on the amount of sleep I get. A natural medicine doctor keyed me in on this. It’s by far the Best advice I’ve received through this entire nightmare.

Best of luck to you!