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Hi,I'm a 24 and i have "post-thrombotic syndrome".

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Guest

Hi,I'm a 24 and i have "post-thrombotic syndrome". Two years ago I had a DVT that ran from my foot to about the height of my belly button. I have recently had a "doppler" and the clot has only partly cleared. It is still badly blocked in my thigh region and I've been told it wont break down anymore. I'm on warfarin and wear a compresion stocking. I have 2 ulcers on my ankle which are at least 3 months old. This condition has totally upset my life and I am desperate to get back to normal. Dr.s I have seen have said what I'm doing now is all I can do. I'm not satisfied with that at all. I feel no one is taking me seriously! I'm too young for this. Can any fellow sufferers give me some advice??Thank you very much for your time.Wade BradyVic, Australia

[i:e5a5e4e478]This message was automatically imported from the original Patient Experience[/i:e5a5e4e478]

1 like, 33 replies

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  • Guest
    Guest

    Posted

    Hi,

    I have just read your note I am 26 years old and also suffer with DVT. My first clot was from my knee to the top of my leg and my second clot was only small but just above my knee. cause I have two clots i am now on blood thinning treatment for the rest of my life. my leg also still swells and I have also developed statis dermatitis in the lower leg. This is because part of my initial clot is also blocking the top of my leg. The doctors have suggested a venal bypass but this is a really bad operation and it would only benefit me for five years. This maybe something that can help you though? I hope you are feeling better soon and this improves. it is nice to hear from someone our age who also has this ilness. Clare Liverpool

    [i:558d3e9d5f]This message was automatically imported from the original Patient Experience[/i:558d3e9d5f]

  • Guest
    Guest

    Posted

    Hi Brad

    I guess we never realised how this could affect our lives. I've not had any problems with ulcers as I tend to do regular lower limb circulation exercises. This will be really useful for you too as the ulcers need the blood flow to heal. Lots of foot pumping, espescially with your feet elevated on some pillows, this promotes the blood flow back to your heart and helps to prevent it stagnating in the veins. Cyclical exercises are best, like 30 minutes on a stationary bicycle as the muscle contraction will press against the veins, again, to help with the all important blood flow. Try to increase your time on the bike instead of heavy resistance. Hope this is useful... All the best!

    PS. I'm a physio so this is based on personal and clincal experience.:lol:

    [i:3bbe70a481]This message was automatically imported from the original Patient Experience[/i:3bbe70a481]

  • Deep
    Deep

    Posted

    Hello, I am 36 and have had 4 DVT's and 3 leg ulcers.

    For the leg ulcers I used Menuka Honey, which you can even get from a supermarket shelf now. I work with a few nurses and they even rave about the honey and say how good it is for ulcers.

    Hope this helps :wink: Keep smiling this could be worse at least you are alive. smile

  • sheila91262
    sheila91262 Guest

    Posted

    Hi are you still looking for info? I am in UK and I have info on post DVT complications and treatment which has recently become available.

    Let me know. Sheila.

    • rozjackson
      rozjackson sheila91262

      Posted

      Hi Sheila!

      I don't know if you'll receive this or not but I'm responding from Canada and I had a few questions for you regarding your son's situation. I suffer from PTS due to clots having buried my valves. Please let me know if we could chat a bit?

      Kind regards,

      Roz Jackson

      Ontario, Canada

    • jeff07718
      jeff07718 rozjackson

      Posted

      Hi Roz, just found this reply. My son had post surgery DVT leading to PTS and May Thurner Syndrome, which was detected by scanning when looking at how bad the PTS was. He had scarring in his veins near the DVT which had left behind tissue even after the DVT had cleared. His symptoms were swelling of his leg, pain and numbness in his leg and this affected his mobility. He was advised to exercise and not worry about the pain, it wasn't doing lasting damage. He was given measured compression stockings to wear on his bad leg during the day and told to elevate his leg at night. He swam and walked as much as possible and this lead  him to develop extra veins which helped blood flow to the heart so the swelling and associated pain reduced. This took about 6 months. His Consultant, Mr Stephen Black at Guy's & St Thomas Hospital was excellent. He eventually was fitted with stents in his abdomen to open up his veins to increase blood flow. He is doing very well and his leg is much better. He has anticoagulants for a year post stenting. Hope this helps. Sheila.

       

    • rozjackson
      rozjackson jeff07718

      Posted

      Thanks so much for the reply! Is he still wearing a compression sock? I actually reached out (I'm in Canada) to Dr. Black and I have a consultation with him via Skype on June 26th. I've been following him on LinkedIn and it's easy to tell that he's passionate about what he does. One last question if you don't mind - was it clots that damaged his valves or another condition? Many thanks!

    • jeff07718
      jeff07718 rozjackson

      Posted

      Hi Roz, He wore the stocking after he first had a clot and then after his stent op but only for about 6 months. His DVT was post surgery and no underlying causes for clotting problems and no valve damage. His main problem was scarring left behind after the massive DVT from ankle to abdomen. I have written in detail about his meetings with Mr Black and stenting op as it was such a ground breaking exercise for us as he had been sent home from hosp and told there was nothing more that could be done. We researched online and found out about the new stent and protocol and got a referral to see the vascular dept at Guys & St Thomas' London. Just being able to go somewhere for advice where they understood how damaging this PTS and MTS were was rewarding. I have written under DVT, PTS and May Thurner Syndrome on here under Sheila 91262 as above but have changed since as I couldn't remember my password!! I wish you luck and hope there is treatment for you. 

      You can watch lectures on Youtube online under  World Thrombosis Day and see Mr Black and others talk about latest developments. Interesting and inspiring. Best wishes, Sheila.

  • sheila91262
    sheila91262 Guest

    Posted

    Hi have you made progress? my son has had 3 stents in his vein to alleviate the problems post DVT. He has been diagnosed as having Post thrombotic Syndrome and May Thurner Syndrome and the stents have sorted out the circulation and he nolonger has pain and swelling. Ask me anything you like, he is 2 years post DVT.

    Sheila.

    • KCS72
      KCS72 sheila91262

      Posted

      Hello Sheila,

      My sister has Post Thrombotic syndrome and May Thurners syndrome. She has a stent and has had numerous operations to adjust its position, but is still in a lot of pain and her leg still swells.

      That is wonderful that the stents have had a positive outcome for your son. I am wondering if your son has discovered any exercise that has helped him and is considered safe with stents? 

      Thank you!

       

    • sheila91262
      sheila91262 KCS72

      Posted

      Hi, I don't know what to say is the difference between success and otherwise in this procedure. He exercises as before his DVT and is able to do so without pain or risk. He has some mild swelling by the end of the day if he is on his feet all day. He is very active, runs, goes to gym, swims and plays several sports incl now football which he had to give up because of the pain years ago.

      He was told he was ideal candidate for stenting and had 3 stents totalling 32cm so as much as is available. So from this I conclude he was   pretty compromised by the PST & MTS. We would have been delighted with only 75% improvement. 

      Where are you? Have they checked the stent is still open and in position? My son had his last scan at 6 months and all was well. They were very keen to keep checking his stents in the first 6 weeks as that is the crucial time.

      Hope to here from you. Sheial.

    • KCS72
      KCS72 sheila91262

      Posted

      Thanks so much for your reply Sheila.

      I think the reason exercise is an issue for my sister, is the placement of the stents - back of the knee for example which makes bending it an issue. She hasnt received guidelines on specific activities which would be ok for her to take on, so I thought I would ask. She can't walk far as the pain gets too much and now she has torn a ligament in her other foot, so we are going to need to get creative! Swimming would be a good option!

      She has another appointment coming up so we shall see what that holds,

      Thanks again for your response

      All the best to you and your son

      Katie

       

  • Karinbra
    Karinbra Guest

    Posted

    Hi Wade

    Sorry to hear of your difficulties. I am writing becasue my daughter who is now21 has had very similar problems. Unfortunately I can only talk about what is available in the UK.  Through me writing to somebody in America and then via somebody in Ireland, we were referred to a consultant vascular surgeon based in London called Stephen Black. He and his team at St Guys and St Thomas London address the problems of post thrombotic syndrome by putting in stents such as the ones which are regularly used for people who have had heart attacks or strokes. In this case though the stents are designed for the veins which are narrower and more bendy - so the stent is much more strong and flexible. The treatment is available on the NHS to those lucky enough to meet the criterion and in the case of my daughter she has actually chosen to postpone the treatment until she finsihes her studies at uni. However if you look back at posts by a lady called Sheila on this thread, her son had the treatment very succsssfully and is doing fantatstically. So it may be worth seeing if anything similar is being offfered in your country. Good luck with it all as I know how devastating it an be to have to go through this all.

    Karin 

    • sheila91262
      sheila91262 Karinbra

      Posted

      Hi Karin, hope you are well. Hope your daughter is still making progress.

      Still read on various pages about other's problems with the PTS an MTS, feel I know a lot more now. Just shows that the positioning of the stent and its composition is so important. Also finding that the aftercare can be very limited for some  but then we feel so blessed to be under the care of Mr B and his wonderful team. There are no promises for the future but as all is good now then we don't feel that should change. We are doubly blessed as his gastric disease is gone never to return and he is as fit as ever.

      I do go on the FB pages and on here as still very little info out there to help people post DVT.

      Take care, Sheila.

    • Karinbra
      Karinbra sheila91262

      Posted

      Hi Sheila

      So glad to hear that everything is going so well for Rob and that the gastric disease also seems gone! Here's hoping he will be able to put this all behind him and keep moving forward towards a happy and healthy future.

      I was also so impresed with the care Ellie received from Mr B and although she is managaing well at the moment, she still has residual problems so this may be one she will revisit...

      I also thought the same about the FB page but wonder if there is some attempt to prevent a stampede of people arriving at the department's door. I did try to discuss it at one of the World Thrombosis day events (when Mr Black was there) but clearly things are still in their infancy and there must be a huge amount of people who potentially could benefit from treatment who cannot be seen. Maybe this thread will help a few who are resourceful enought to do a search?

      Anyway my continued best wishes to you and your family and we must keep up the good work!

      Karin x

    • sheila91262
      sheila91262 Karinbra

      Posted

      Hi Karin, Great to hear from you. You and I have been very lucky really as it does seem to be a bit of a blackhole when it comes to info. 

      At some point the stenting trial will have enough results and they will have spread out the procedure to many hospitals instead of just a few.

      Keep spreading the word.

      Sheila.

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