Anticoagulation UK
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Scan results

So I finally got my scan results from St Thomas' Hospital London yesterday after having a vein ultrasound, MRI scan and blood taken in February. It seems I was right, my leg is getting worse after the two DVT's I had 11 years ago. I just wish that I had asked to be referred earlier but my Dr wasn't helpful the last 5 years and I'm definitely changing doctors now. It turns out I have moderate post thrombotic syndrome, who knew there were 3 levels. The biggest thing is I've got to have keyhole surgery to have a stent fitted and then go back on warfarin for at least 6 months.The waiting list for this op is a year and it will get worse. I am really glad I pushed for that referral however silly my own doctor made me feel. I am noticing I'm getting tired, physically more tired than a year ago and more breathless and that's because I have inadequate blood flow. The sentence that the consultant said that sticks in my mind is 'you can't go back, it's now looking to the future but you have a medical condition that will be with you for the rest of your life and will affect you for the rest of your life'. My advice lovely people is be brave, fight for what you deserve and never give up hope xx

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That's a long wait to get results 4 months.

You instinctively know when something is wrong in yourself so that's why you insisted you have that referral to St Thomas hospital and didn't let them fob you off.

Good for you for not letting yours be fobbed off!

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It was only because my sister in law and brother came with me to my own Drs appointment in January and insisted he did something. I got cellulitis in end of October last year and after 5 frustrating weeks of going backwards and forwards to many drs and paying a fortune in medications, finally got sent to my local hospital where I had IV antibiotics for 4 days. That was my turning point.

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But of course they don't know how and why I got cellulitis either.

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What exactly is it that they do know is my question?

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The local hospital said it was cellulitis hence why they gave me the IV antibiotics. The thing is that I got it even while wearing the sexy compression knee high stocking sonic they are supposed to help, they didn't. Recently I went to the clot conference at St Thomas' Hospital and the professor said that there is no medical evidence that wearing the sock prevents another clot, just supposely helps with circulation. They cost a fortune, someone medically needs to look at why we have to pay a prescription charge per sock when they come in a pair! X

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I wear compression hosiery for lymphodema, after getting severely bitten by mosquitoes in the islands, getting cellulitis which affected the lymph glands in my groins. I was measured and flat knit hosiery ordered for me from the hospital...first pair were free, now I have to pay NZ$500 a pair!

I have still had cellulitis a few times since...it can flare very easily with lymphodema, despite having to wear the stockings every day.

Unrelated to this, I have also had what they say is an 'unprovoked' PE but I really do wonder at this 'unprovoked' as when I incurred the extreme reaction to the mosquito bites, I was also afflicted with a terrible, croupy cough ( sounds like whooping cough!) which has never left me ...I truly believe the impact this cough has had on my lungs daily could have caused this clot, for which I'm on warfarin for life.

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My pe was supposedly unprovoked as well and I will probably be staying on anticoagulants as well.

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It always helps to have someone with you at these appointments.

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Hope you get a bit of time to recover mentally and emotionally. Hope all goes well with you

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Thank you, I am in a bit of a brain fog at the moment as I'm realising I can't do as much as I could do last year.

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I’m sorry to hear your story , my lung specialist said he couldn’t find anything wrong with me that all started after a bad chest infection in beginning of 2016 , turns out when I got 2 ct scans one in sept 2016 another snot 6 months later in a different hospital they both gave wrong diagnosis. Iv only found this out by accident after going to menapause clinic dr looked at my records and told me my lung dr got a 3rd opinion on my condition and they told him after a team of drs studied all my scans and symptoms that 2 mistakes were made ., I had blood clots that were clear to see in both scans so now they have started to panic and are sending me for one more can and are eventually not talking to me like I’m pretending to feel so breathless and weak , iv also got loads of fluid all over my body and my kidneys aren’t working properly iv to get a wheelchair to get about in as I can only walk a few steps with sticks but there’s another problem my RA has flared up so using sticks are ver hard, I’m confined to my bedroom now for over a year not been able to do anything all because mistakes were made and the worst part for me is how the drs made me feel like there was nothing wrong and we’re going to discharge me last year. Sorry I went on a bit there but believe in your body and how your feeling and keep going till you get an answer mine copd & bloods clots in both lungs x⭐️ Good luck for your future 🌹

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Sorry to hear all that, you didn't go on in your comment. It amazes me how little some drs know. Im told it varies how much training drs do on clots and how to recognise the symptoms, how it is important to scan as part of admission to hospital when other more obvious things have been ruled out. I'm so sorry that you are confined to your room because of the pain and anguish you are going through. Good luck to you too and hopefully they now do something for you x

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This is so scary.... I am so sorry that you are going through all of this pain and the dealing with unanswered questions and constant worry. I can very much relate. I had my first DVT when I was young too, about the same age, and I was pregnant with my second child. They (doctors) assumed it was a "maternal clot" due to hormones and I finished a long round of Lovenox injections of 9 months with compression stockings suggested for 6 mos., and that was that. Now, 13 years later, this past Feb. I got another clot (same right leg) and they don't know why. I had been recovering from a back injury from September. SHM.... now I'm told it is genetic, though they cannot pinpoint a reason bc my blood work all came back negative. They did tell me I would experience post thrombotic syndrome--- due to scaring in my upper thigh vein area. I am currently on (lifelong) warfarin.

Are the doctors considering you for longer period of anticoagulation? I was destroyed when they told me I'd need to be on Warfarin for life.... but I also am scared to be without it. One year to wait for a stint is just crazy. I would hope there will be a sooner availability for you. Sending you hugs and my prayers for healing.

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Thank you for the love and support, it means a lot. I would be lost without this forum and the lovely people on it. I get the impression I should have been on warfarin longer when I got the original clots. I would rather not be on the warfarin for life especially as there are so many new drugs with less side effects. I'm sad that I can't give blood at blood donors anymore for the foreseeable future, I've given 34 pints so far and it also goes to neo natals which is especially important to me as I am a Nursery Nurse xx

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I completely understand your distress regarding what you can no longer accomplish....blood donation is such a gift to others. It's terrible that someone in your profession, the medical profession, is not getting the care and attention that you require in a timely manner. Especially in this instance, as it can be life threatening...though you are protected on Warfarin, I understand that, but I don't understand how you would have to wait for a year for a surgery that would prevent further damage to your leg. So upsetting to me. As anyone, but especially as a nurse, you deserve better! Praying for you, take care of yourself.

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Sorry I'm not a nurse, it's the name for a qualified Childcarer. Thanks for your support, there are so many people needing the same ops because other hospitals don't do the same, it's specialised. I don't mind waiting, I've waited 11 years for some sort of diagnosis. Im just frustrated that two unprovoked DVT'S back in 2007 did so much damage to the inside of my leg. I am frustrated that so many medical professionals couldn't communicate with one another and tell me the whole story of what was going on till now. I'm frustrated at all those medical people who told me to 'just wear the sock' and that I am/was a worrier. We may be making some strides in the medical area of DVT'S/PE'S/Strokes etc but more needs to be done and certain medical professionals need to rethink their attitudes. Take care of yourself too x

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The lack of communication is disgusting in my view in healthcare!

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Ah ha, ok, I'm in the USA, so that was my misunderstanding/faux pas ..... but doesn't change a thing---- you are still much deserving of a faster treatment to prevent further injury to your leg. Your health is on the line and that makes me so sad for the state of Healthcare in this world. I would think that you most definitely should have been on longer anticoagulant treatment with two DVTs.... very upsetting. Sending you extra prayers hunny---stay strong and take care of you!

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Just wanted to say I agree the medical professionals really do want to change attitude, try and put themselves in the patients place how frightened they are, I really wish you well and just Manet you’ll get all the help you need now (((hugs ))))

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Hello Amhayllar. Sorry to hear about your leg. I had an unprovoked DVT. 3 Yrs ago, My calf swelled up after a bike ride. It took over a week and several scans for them to work out what was wrong. when they eventually found out, i was admitted to hospital that day as the clot had broken off into my lung!.

3 yrs on. My leg is still swollen. the only thing i will say is that i don't get loads of pain. i still cycle my bike. i guess being fit helps.

last week, they put a camera in my leg and found the dead clot in my thigh. One option is to have stent put in , although they are not sure it will help. Interested to hear what they have said to you about the stent ?

regards

john

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Is this a new clot in your thigh? Did they put you on blood thinners after your 1st unprovoked clot and if so which one and what dose?

Finally - did you do any genetic testing or any bloodwork done that might check for APS antibodies, Factor V, etc?

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Strangely enough when I had a scan done in a local hospital in 2011 they told me they couldn't do a stent because there are too many clot particles in the leg and also because I would get another clot but this stent is at the top of the leg vein, belly button area which would explain why there are clot particles in my belly. I just wish someone had explained this before, as after the scan in 2011 I was left with more questions. It's just been a hard slog to get anywhere or get any kind of answers. I didn't really get a lot of info. The stent should open up the blood flow to the leg, so it can also come back to the heart quicker but who knows at the moment if my scarring is too bad or if the stent works for many a year. I will have more scans and tests before it's done. I am not looking forward to going back on warfarin afterwards but we have to do whatever makes it better in the long term. Kind regards, Anne-Marie

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the clot in my thigh is 3 years old and now dead. was on blood thinners for 12 months , Rivaroxaban. have been off the thinner for about 2 yrs .

had loads of bloods tests. all came back negative.

i guess the issue now is that my leg will not get any better. i am now 50, so the risk it will get worse, so having a stent put in may help

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That's kinda what the consultant at Guys and Still Thomas' Hospital said to me. If I leave it, I will get an ulcer as my ankle is already discoloured and my post thrombotic syndrome is moderate. It wasn't discoloured when I had the original clots. I had endless blood tests and like you they all came back negative. I was also a regular blood donor but that has to stop now too. Take care, Anne-Marie

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