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Long term effects from DVT

Posted , 4 users are following.

Tinman49
Tinman49

I suffered a bad accident 16 months ago with multiple injuries. I was not on blood thinner for risk of internal bleeding even tho I was non weight bearing and used slide boards to move from bed to wheel chair. Six weeks later I developed massive blood clots in both legs from ankles thru pelvis to IVC filter that was put in after surgeries.

When I noticed both legs swelling, I had my wife take me to the ER. They rushed me to an exam room and started me on heparin IV. After ultra sound and CAT scans, they decided to do a ( very expensive) CDT catheter directed thrombosis to bust up the clots. I was put on blood thinner pills after that. Now my Hematoligist tells me they got 80 - 90 percent of clots busted up.  She said the flap valves and veins in both legs are damaged. She said to elevate legs when I sleep and not set over an hour without getting up and moving around. This will help prevent pooling.  She did not say what long term effects I will experience. Has anyone had this happen to them. She took me off of blood thinners now because the clots were the provoked type and not heredity 

 

0 likes, 9 replies

9 Replies

  • Gate_Keeper
    Gate_Keeper Tinman49

    Posted

    My sincerest good wishes to you sir!

    On 9 Dec 2015, I had a big bypass and aneurysm tie off in the left leg, The surgeon managed to clear out most of the clots. Some of them had cut off the blood supply to the foot with the leg was starting to die off. I am on a drug called Clopidogrel which stops the platelets from sticking and is supposed to stop more clots occurring, but I have been warned to go to ER if I suddenly become short of breath in case I get an embolism in the lungs. I have to keep walking every day. On 27 Feb I am flying London to Nairobi and the doctors have told me to walk on the hour, every hour during the flight.

    The only side effects from the Clopidogrel I get is that if I cut myself shaving, it's messy and I feel the cold more.

    I wish you all the best for the future

  • sheila91262
    sheila91262 Tinman49

    Posted

    Hi,Sorry to hear your story, have they said anything else can be done? Where are You?

    I have some experience of the DVT and vein and valve problems as my son had a massive DVT in his left leg after abdominal surgery. Most of our initial research was on the internet as apart from wear compression stocking and take blood thinners that was all that was said. My son was told that because of his size and extent of DVT he was probably going to develop Post Thrombotic Syndrome and symptoms of swelling and pain and discolouration. He did have these and was told don't exercise after it starts hurting and raise leg at the end of the day and wear stocking all the time except sleeping. We went to the experts at Guy's & St Thomas' Hospital London as the internet showed that they were trialling treatment for PTS. He had scans and blood tests and was told exercise as much as you can as your circulation will improve and collaterals will form. He continued to wear stocking and over the next 18 months of fitness improvement he did improve and the symptoms reduced. 

    He was accepted onto the trial and had 3 stents fitted into his left leg vein above the knee, groin and abdomen. He was diagnosed as having May Thurner Syndrome also which also reduced his leg circulation but was treated by the stent in the groin. 

    I am pressuming you haven't had these terms used as part of your diagnosis as you havent mentioned them, but you may not get them. My son is now 2 years post DVT and 2 months post stenting. You can look these up online. My son has responded very well to the stents and is on Warfarin for 6 months and has no swelling. We feel so pleased with his progress as the symptoms were life changing. Stenting in the UK is very new and the type of stent has been developed for this trial. We are grateful that he could be a guinea pig!

    Hope this helps, ask any question you like as we have come a long way in the last 2 years.

    Sheila.

    • Tinman49
      Tinman49 sheila91262

      Posted

      Thanks Sheila 91262       I live in the U.S. SPRINGFIELD MO. The interventional radiologist that did the CDT told me at the end of the 72 hour CDT procedure that she got most of the clots busted up ( 80-90%)  and to follow up with a Hematolagist. I had three short appointments with the hematologist. She tested my blood each time and said the blood results looked good, and said the DVT was the provoked type since I was immobile and not on blood thinner for 6 weeks after the surgeries. She took me off blood thinner, removed the IVC filter and told me to walk around every hour if riding in a car or sitting and to elevate my legs when I sleep. This will prevent pooling in my legs since my flap valves and veins are damaged. She dismissed me and said to follow up with my PC  doctor if I have any questions. I never did see a vascular surgeon or anyone else dealing with DVT's. Since I'm on workers comp., the WC insurance company calls all the shots on what care I get. If I start to develop PTS from this, I will appeal my case to the Ins co, and  try to get more help.

      Thanks so much for your reply and may God Bless you and your son

    • sheila91262
      sheila91262 Tinman49

      Posted

      Hi, I guessed that you were from over the pond as the vocabulary is different. Thanks for the sentiment, it's annoying that you like our son were not given the correct information or medication to avoid the DVT in the first place. You are lucky to get thrombolysis, clot busting, as not readily available here, only some Hospitals do it. 

      I forgot to mention that my son was measured for a compression stocking which he wore to reduce the swelling and pain in his leg and it was very good at reducing the symptoms.  In the US they have put in stents to open up and support damaged veins for years, we are pretty new over here, but apparently the new stents here are specific for veins and proving very successful. 

      Hopefully your veins will improve enough to not need any more intervention, keep up the exercise as my son was told that collaterals open up to help blood flow. All I can say is we are so lucky to have the internet to research and share our aquired experiences. 

      Best of luck, Sheila.

  • Gate_Keeper
    Gate_Keeper Tinman49

    Posted

    Tinman, can you please acknowledge my reply to you, as I was trying to help by sharing a similar experience. Thank you sir.
    • Tinman49
      Tinman49 Gate_Keeper

      Posted

      Thank you for reading my post and sharing your experience. I will ask my Doctor about the drug Clopidogrel and see if I should go back on some type of blood thinner. I worry about a clot in the future since my veins and flap valves in both legs are damaged. 

      I was told that collateral veins in the legs will enlarge and help carry blood, but I don't think they will have adequate flap valves to prevent pooling. I will try to get the WC Insurance company to approve a visit to a VASCULAR surgeon. 

      Thanks again and best of luck to you.

    • Gate_Keeper
      Gate_Keeper Tinman49

      Posted

      I can see Tinman how much a worry it is for you. Some people posting up talk about being stented. I was told my blood vessels were beyond stenting and that a bypass was the only option. The making of collateral veins did not work fast enough.Even though the operation was partly successful, the Clopidrogrel hopefully, will stop more clots forming, I remain scared of inactivity and like yourself have to keep walking/moving. I have 2 flights to do tomorrow, one being 8+ hours. The docs say I have peripheral vascular disease in both legs and must not wear the anti-clotting stockings,as they will make the circulation worse. We are all different. The operation I had 3 months ago, made me feel as though I had been hit by a train but I am grateful to the medical and nursing staff in getting me through it. The NHS kept cancelling my vascular appointments, in the end I had to activate my private health cover which got me through the operation and paid for everything. One has to keep them informed every step of the way in case they refuse to pay for a treatment or a test later on. All the best with the Plavix (Clopidrogrel) or vascular appointment approval.

      Please keep posting Tinman

  • Vivi3nne
    Vivi3nne Tinman49

    Posted

    Last July I had a clot in one leg from knee, through groin and across my abdomen and had the clot busting angiojet also plus a stent put in as another vein was lying across the one clotted and was squashing it slightly.  They told me they had removed around 80/90% of the clot also.  I had heparin and now take warfarin.  The cause of my clot was unknown and I was active so its a bit of a mystery.  I walked as much as I could from the start and elevated my leg when sitting/laying and was sooon back to my 3 mile daily walk that I have done for years.  In November scans showed the blood flow was good both ways and the valves were working pretty good but there was some damage to the vein. They also said many new veins had opened up to take the blood flow which was probably due to my walking.  Seven months on, I have no problem with my leg at all other than when I am walking very fast, then it aches and I get a pain in the top of my foot, both go immediately I stop walking and after a minute or two i can carry on. Regular pace walking causes no problems at all.  If you are able to, I would strongly recommend lots of walking to get the new veins opened up.  My GP tells me having the clot removed has prevented lots of damage so things should be good for you.  Good luck with it. 
    • Gate_Keeper
      Gate_Keeper Vivi3nne

      Posted

      Thank you Vivi3nne for giving inspiration and hope. You are many months ahead and clearly you have benefited from doing lots of walking and from the treatment you had.

      We are 2,000m above sea level, so I have to pace myself more slowly. I have a long walk in the morning and evening, just before dark. I swim every other day. The surgeon did warn me against being like an athlete.

      I like your outcome of making new veins. Thank you

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