Proximal Deep Venous Thrombosis - terrible swelling

PTS is post thrombotic syndrome where there are on going problems after the dvt has healed. I have written loads on it under PTS on this forum. It is the long term effect of scarring and valve damage in the veins. That is why my son has been referred to Guy's London as they are the experts in these vascular problems and they are one of the few places in the UK where treatment is  available, in fact my son's GP didn't know about it at all. I researched it on the internet and heard about the Thrombosis  UK charity and they were helpful too.

My son was told by the docs in our mediocre hosp that he would have poor circulation and swelling and poor mobility which would get worse as he got older, that's why we looked for a cure!

So are your blood thinners working?, ie INR levels good and regularly checked. If you have this blood underlying problem with low white cells are they treating you differently? Are you under a hosp clinic for your DVT as they should follow up and scan to check the DVT is going. The body absorbs the DVT so you need to stay healthy.

It is recommended that you are mobile every 90 minutes if you do a sedentary  job, so get up and walk around, flex calves etc, just like you should on a plane. Keep hydrated too as this adds to the risk of another DVT, but if the blood thinner works that is less likely. Some people who have higher risks are on eg Warfarin for life to prevent DVTs.

Have you had counselling? I had a 6 weeks course at my GPs  and found it very helpful. This was because my son nearly died 3 times, long story, and I just couldn't cope but I developed strategies to help me to cope via the counselling. Also things got better.

I would ask loads of questions of your doctors and do as much research as you can and if necc get a referral to a  hosp  where they specialise in vascular and blood. Try not to worry too much but having answers to you questions from the right people should help.

I would like you to elaborate on one of the points touched upon hastily in your discussion with me, but which impressed me a lot, namely the ability of colaterals to, as you put it, DEVELOP following a DVT incident and, with a little improvisation on your words, to take over completely and irreversibly the function of deep veins in case the latter never recanalize.

May the colaterals cope with the whole burden of blood circulation normally taken care of by deep veins?

Moreover, forgive my ignorance, but what hapens to such colaterals under such conditions, do they dilate due to the strain, do they make the leg look different ...

Konstantin.

The collaterals are bypass veins that help the blood to flow where there is a reduction in flow in the main veins, and they open up and increase in size to aid the total blood flow. They are generally small but can become bigger if there is blockage. They don't take over but add to the volume of space for blood to pass.

The explanation is on the internet, I try and find easier explanations as the ones at the Hospitals can be too quick and complicated. The Consultant said they continue to open up and are utilised for approx 2 years. The swelling due to PTS is because the veins take the blood up towards the heart, against gravity, and with scarring and valve damage the blood flow is slower than the arterial flow downwards so the blood pools in the tissues in the lower leg. My son is on his feet all day and wears a stocking to reduce the swelling and elevates his leg whenever possible.

He is a sports coach and is active and fit so his leg muscles do a good job in compressing against the veins to increase flow upto the heart, so as I said he has been told to exercise and don't worry that it hurts and he is improving his healing.

He gradually got better but not fully recovered which is why they are considering a stent in his leg to open up the vein to increase blood flow.

It has taken 18 months to get here and he is now less swollen at the end of the day, as time went on he was able to exercise more and more without so much pain and swelling. The compression stocking does not stop him developing PST but it does reduce the swelling.

I havent seen any extra visible veins in his leg but he mostly has a stocking on.

You are assuming that you are not healing well, has anyone suggested you may get PTS?

Have you been measured for a compression stocking professionally? They are helpful in reducing the symptoms and do exist as a full leg so don't cause problem behind the knee. I hope this helps.

Sheila