Post thrombotic syndrome

[Mc9876]

I had a very large blood clot in 2014 in my groin all the way down my thigh and calf, the consultant at the time advised I would never recover completely because of the damage to the valves in my veins.

I am just looking to hear from anyone who has been diagnosed with PTS or has symptoms such as constant tingling, numbness, heaviness in leg, pain and cramps. I am struggling mentally and physically with this condition despite wearing compression stockings and walking everyday it never eases.

Would love to hear from anyone who is suffering with long term effects of a DVT.

Thanks for reading

[maejane]

Snap! After having my son in 1997 I had a massive PE and had a lot of pain down my right side from the groin to calf but nothing was done about it until 2009 I had numerous PE in both lungs and the same pain, luckily I had a consultant that listened this time and diagnosed me with post thrombotic syndrome, the pain at time is unbearable sitting and standing to long doesn't help I was given stockings to wear and gabapentin (but it does work to well) and paracetamol and told that the damage is done and there isn't much more they can do about it they are more concerned about preventing any more blood clots. But this site is ideal for asking questions and getting support X

[jaxta51 in reply to maejane]

I had a DVT in 2013 after fracturing a bone in my foot. I thought I had made a full recovery but have recently experienced pain, swelling and stiffness in the affected leg. I no longer wear the stockings and would prefer not to have to go back to them if at all possible. Obviously the first port of call is your doctor and/or specialist. However, I have had success with Horse Chestnut extract which is recommended by the NHS so not just a herbal supplement. Apparently it can help to make veins less porous which prevents fluid leaking into surrounding tissues, and also supports venal function (whatever that means!).

I use horse chestnut extract cream on the affected leg once a day and also take a supplement (tablet). My symptoms were not so dramatic as yours but the effect of the treatment was - within a few days, the swelling had gone down, the "heavy" feeling went and I had much less pain. I was honestly very surprised as I wasn't expecting much.

As the NHS recommend this treatment it may well be available on prescription; I bought mine as my doctor was not that helpful but am going back to see if he will prescribe it for me.

The other thing I find helpful is keeping the leg raised at night, either by raising the foot of the bed on blocks or just sleeping with the leg on a firm pillow - feels odd at first but you soon get used to it and it does seem to be beneficial.

Good luck and I hope you find something that helps!

[jaxta51 in reply to jaxta51]

With reference to my post above about Horse Chestnut Extract, I wanted to add an important note of caution. I no longer need to take oral anti-coagulants after my DVT. If anyone is thinking of trying Horse Chestnut Extract and is taking an anti-coagulant such as Warfarin, you MUST check with your doctor first as many medicines, foods and supplements interact with Warfarin and change the way it works. This could be very dangerous so please take advice before you try anything.

[Mc9876 in reply to jaxta51]

Thank you x

[wild_cat]

I have just had a consultation with the vascular surgeon last week and he's confirmed my veins are damaged and scarred from my DVT's, i'm waiting on scans to see the extent. i have constant pain in both calf's, he has said there's nothing can be done except elevation and he wants me to have the tightest of compression stockings.....no way they give me more pain!! i am already wearing grade 2.

It's a blow as i am only 30 and all i can see now is a life of pain.

If you like we could help eachother through it? I have no one else to turn to as none of my friends understand.

[Mc9876 in reply to wild_cat]

Hi Wildcat,

I was just wondering how you are getting on? Have you had the scans back yet? I am still pretty much the same 😔, trying to stay positive for Christmas!

Hope your well xx

[wild_cat in reply to Mc9876]

Hi!

Yes i had my ultrasound scan last week confirmed a valve in both thighs aren't working as they should.

*gutted*

Just waiting follow up appointment now.

Christmas may help as it's a perfect excuse to sit and relax!!

Are you taking anything for your cramp? I've been put on Quinine now as my cramp is constant and Amitriptyline for the pain.

<3 xx

[Mc9876 in reply to wild_cat]

Sorry to hear that wild cat 😔, is there anything they can do for you?

I am taking gabapentin to see if it helps with pain and discomfort but nothing noticed as yet, been on it for three weeks now. Has the quinine helped at all? I have taken Amitriptyline in the past for another problem and I ended up with restless legs and as soon as I stopped taking it then I was fine, glad you are getting on good with it though.

It's very soul destroying living in constant pain and knowing Dr's can't really help, everyday is a constant battle. Sometimes think my GP dreads me coming in but I can't live my life like this forever it's much worse than when I had the DVT. How do you manage on a daily basis?

Sorry for sounding so bah humbug! X

[amhayllar in reply to wild_cat]

Feel your pain. Had two DVT's at aged 28, ten years ago.My doctor has said I have post thrombotic syndrome and theres no cure. The DVT's scarred my veins and tissue. I believe i should have been followed up a couple of years after the orginal clots. My circulation is bad, the colour of my foot and ankle is horrible. I wear grade 2 knee high compression socks, used to wear thigh ones. Make my chillblains worse. You are not alone.

[Rousseau]

I've had a couple of DVT's in my lower leg and subsequent PTS symptoms, which have at times been quite severe but have now abated. I think elevation, exercise and compression stockings is about as much as can be done. You may find that it dissipates anyway as time goes on. I wore compression stockings, various brands of Grade over 18 months but the jury is still out as to whether all the discomfort and aggravation is worth it and I'm not sure I would bother again. A Canadian study by Susan Kahn suggests there was no statistical difference in PTS symptoms or re-occurrence of DVT between those wearing compression stockings and a placebo stocking. I hope your symptoms abate soon.

[naveedy in reply to Rousseau]

Still think its important should wear compression for a while - it helps the effects on the leg and vascular surgeons supports its use - at least Grade 2 compression