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
This message was automatically imported from the original Patient Experience
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
This message was automatically imported from the original Patient Experience
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:
This message was automatically imported from the original Patient Experience
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. 
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.
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.
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!
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.
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
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
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.
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
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.
Hi there. I've struggled with post-thrombotic syndrome for six years, resulting in swelling and intense pain in both of my legs. My doctors have had few solutions, advising me to cut wheat and dairy from my diet, as it made my inflammation worse, and wear compression stockings. The pain persisted, so I had to do a ton of research on my own. It turns out hypothyroidism runs in my family and can increase tge risk of thrombosis. I had tests years ago for hypothyroidism tgat came back negative, but never had the series of tests to track each thyroid hormone. Without health insurance (which is still expensive here in the US), I had to diagnose myself.
I already had a diagnosis of anemia, which impacts the thyroid's ability to function. I started taking iron supplements (specifically liquid Flurodix) to regulate my iron levels. After six weeks, my iron levels returned to normal. Then I began taking raw bovine thyroid supplements twice a day, once after breakfast and once after dinner. A few weeks later, I don't have pain in my legs for the first time in years. I still have minor swelling in my legs, but it's reduced, and the pain is gone.
Get extensive testing of your iron and thyroid levels, and don't give up!
Well done for taking your health into your own hands and researching. The science behind vascular health and treatment is still pretty new and research is on going. The stents my son had are still a trial and lessons are being learned. The treatment of the whole body is important and should always be investigated.Good luck to you. Sheila.
Hi Sheila, which doctor did you see for the stents. I am based in London too and have the similar problem. I hope your son is doing well ?
Hi, My son attended Guy's & St Thomas' London under Mr Stephen Black, Consultant Vascular Surgeon and his team. All is good, he had massive DVT, PTS and MTS. I have written above about his problems. He is 16 months post stenting and has almost no symptoms and very active. He got his GP to refer him. You can search him online, he is running a trial for the stents as they are made for veins and v strong and flexible and the aftercare includes scanning to check no clots. You can even watch the interventional radiology on you tube. Good luck, Sheila.
Hi Sheila, is there a way we can get in touch with you. Can't find much satisfaction after speaking to the GP's. May be you guys can help thanks
Regards Ranbir
Hi, Have you been properly diagnosed with post DVT problems? My son had no help with his GP and local hospital, it was only when we researched online that we heard about PTS treatment and they diagnosed the May Thurner Syndrome at G&StT and suggested stenting. This treatment has only been around a couple of years in UK and has been successful except in some v complicated patients. The GP referred him to Mr Black under NHS Choices and we waited about 3 months for an appt. In my experience the GP has to refer you if you need to see a Consultant and you can choose which one. The Thrombosis UK Charity is v good and informative and they have a facebook page which I contribute to. Lots of info online now, far more than in Jan 2014 when we started looking.
Is that enough to help? Sheila.
I just have been going to GP lately as I can see there is loads of rashes appearing on my clot leg. It was Oct 2014 when I had a clot and was on blood thinner tablets for 6 months and nothing after that but the rashes and discolouration is appearing on my leg and it's really impossible not to scratch and I can see it's getting worse. I did research online and I think it's called PTS. GP's say just keep using moisturisers but I have been using them for quite a while now and it's not making any difference. I really want to control this before it gets out of hand. Would these stents help with all this and how much did they cost you?