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Your Experiences with Post Thrombotic Syndrome
Started by Sarah
Posted: October 12, 2008 at 21:37
Hi All,
for those of you that have had your dvts for awhile, I'm curious about your experiences with PTS. I'm 8 months past my initial diagnosis. Lately I've been feeling some slight pain in my vein in the upper/inner thigh. I know this is where my clot was, and I know I have residual clot there as I never had thrombolysis. I had a follow up ultrasound 2 days ago to assess for reflux so I know this is not new clot. The discomfort is usually not too bad, and seems to subside after awhile. Have any of you all felt this as well? Not much swelling, just this vein stuff that I think is happening a little more often than it used to. If anyone cares to describe what PTS is like for them I would be intersted in hearing your stories.
Sarah
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Re: Your Experiences with Post Thrombotic Syndrome
Reply #1 by susie
Posted: October 13, 2008 at 19:37
hi sarah
i dont know if this is pts but im 7 months since being diagnosd but i have been having more pains where my clot was and up the back of thigh /behind knee, some sharpe pains but more aching some times i take pain killers when it throbs too much which i didnt take when i first had dvt , so on that im having a scan on weds hopefully to get answers a bit like yourself, sorry not much info to help you though
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Re: Your Experiences with Post Thrombotic Syndrome
Reply #2 by John in Dallas
Posted: October 14, 2008 at 09:55
Sarah,

I had the classical symptoms of PTS for about 3 mos after my intervention surgery. My leg ached and bothered me all of the time and I was always aware of it. However, it began to improve slowly and now I hardly have any symptoms at all. I sometimes have a bit of twitching and tingling in my lower leg, but am for the most part symptom free except for what you have mentioned.

The thing that caught my attention with your post is that up until about a month ago my inner thigh just above the knee would have an aggravating pain. It was there most of the time but would come and go. It felt like sort of a dull ache and maybe a kink just above the knee. It wasn't too bad but just enough to make me feel uncomfortable and be a pain in the butt! I attributed it to a spot just above the knee where my vascular surgeon was unable to completely remove all of the clot and he told me it would be chronic in that area. I still get this pain every now and then, but it is much less frequent than before. I wonder if it's indeed vascular pain from the chronic area or something else that is screwed up from the reflux that I have. It has improved though within the last month a lot.

So is this the way your thigh feels? Sort of a kinky dull pain that is there especially when you sit or stand for a period of time, but is less when you walk around and then you notice it more so when again at rest. That is what I have experienced, but like I said mine seems to be going away as time goes on. Let me know if your symptoms are similar to this.

By the way, I hope everything is going well for you otherwise.

John





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Re: Your Experiences with Post Thrombotic Syndrome
Reply #3 by Kevin
Posted: October 14, 2008 at 16:11
My DVT occured in the morning of 8/28 (knee and up). I was put on Haparin about 9 hours after. I had no pain. I continued working as normal. After 3 or 4 weeks a second DVT occured (due to my negligence...work...standing a few hours continuiously...reducing Cuamdin from 7.5 to 5 mg on my own),...hospital...Lovarex (sp?)... no pain.

Since about 2 weeks ago, I started having this annoying pain, very mild, it moves from place to place, it may last a minute, now it is lasting longer (may be 20 min). Had I not had DVT, it wouldn't have bothered me.
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Re: Your Experiences with Post Thrombotic Syndrome
Reply #4 by Malcolm
Posted: October 14, 2008 at 18:20
This all sounds very familiar. I had a dvt 8 months ago (having previously had one 20
years back), and then 2 weeks ago I started having pains behind the knee where the
clot had been and radiating up into my thigh and down into the calf. I was unsure if I
was imagining it all as it is easy to get over-worried, or whether it was post
thrombotic syndrome (which I have read about), or what.
I was waiting a appointment with Vascular Studies, having nagged my GP into a
referral, and they eventually agreed to do a holding scan to see what the pains were
about. That scan revealed that where the clot had been 8 months ago - popliteal vein
- was now clear, but that there were "occlusions" in several veins in the calf. No one
knew if these were new clots whilst on warfarin or what, as they had not been picked
up before. My GP thinks they are new though also says it should not happen on
warfarin. Another doctor at the hospital said it was PTS and that I may have to get
used to it.
Whatever the cause, the symptoms seem similar to the previous dvt 8 months ago and
having read all I can on the internet about this it seems there is no clarity a lot of the
time as to what is PTS, what are new clots, or what are other pains. I am left just
believing that I know my body best in terms of what makes it hurt and what does not,
though the problem is that rest is more comfortable and exercise more painful but I
cannot laze around or stay off work for too long.
But when, as with me, there was no clear external cause (such as trauma, flight etc)
then it is hard to know what to do in the future, when sitting normally and driving any
distance are the actions which bring on the pain, be it PTS or not. Support stocking is
essential to reduce discomfort though.
No idea if that is any use Sarah, this condition is a strange and chronic one, and as I
said I trust my own judgement more than any medic I have met thus far.
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Re: Your Experiences with Post Thrombotic Syndrome
Reply #5 by Julieanna
Posted: October 15, 2008
Just wanted to say I have been dealing with all of this - Factor V Leiden, DVT's, vein surgery, etc., for over nine years. My vein doctor has explained that the unexplained pain is due to scar tissue. There's a lot more that goes into explaining everything, but put simply, it's more than likely scar tissue or smaller veins trying to accomodate those that no longer work.
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Re: Your Experiences with Post Thrombotic Syndrome
Reply #6 by Sarah
Posted: October 15, 2008 at 02:51
Thanks all for sharing your experiences. it's interesting to compare stories.

John, yes, it sounds similar. It's kind of an ache, but not really like muscle pain. And it's not horrible, but it does hurt, just not too badly. It's mostly the upper third of my inner thigh, but at times I can feel it lower. It also comes and goes and today I hardly noticed it. I think it probably is scar tissue like Julieanna said. I just wonder how exactly that makes my leg hurt. What does the pain come from? scar tissue pressing on something? Wish I new. weird. I do notice it more when I'm sitting, which surprised me. I thought for sure if I started getting PTS stuff it would be worse when walking around, but it seems to lessen when I get up to walk.

Sarah
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Re: Your Experiences with Post Thrombotic Syndrome
Reply #7 by Linda
Posted: October 15, 2008 at 19:11
I had my clot in 2002 and not a day goes by that I am not reminded of it. I have some pain every day and my leg remains swollen and discolored. Yet I feel grateful as it could have been worse.

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Re: Your Experiences with Post Thrombotic Syndrome
Reply #8 by Sarah
Posted: October 16, 2008
Hi Linda,
I'm just curious, what kind of pain is it? sharp, dull? is it along the vein where you had the dvt? or is it painful from the swelling?
Thank you for your input :)
Sarah
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Re: Your Experiences with Post Thrombotic Syndrome
Reply #9 by Tom in Connecticut
Posted: October 16, 2008 at 13:58
Here is a Patient Newsletter discussing PTS (aka Chronic Venous Insufficiency and Venous Stress Disorder). The newsletter is created by a Patient Advocacy Organization working with the U.S. Centers for Disease Control and Prevention (CDC) to raise awareness about clots:

http://stoptheclot.org/Newsletters/Natt_Newsletter_Spring_2006.pdf

Regards,
Tom
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Re: Your Experiences with Post Thrombotic Syndrome
Reply #10 by John in Dallas
Posted: October 17, 2008 at 07:17
Sarah,

Just out of curiosity, do you have any swelling in your thigh area where you described the pain? I noticed that my leg feels warmer than the other in the thigh area when this happens, but with no swelling. When this happens I examine both legs to see if they look the same and they always do. Like I said, this is happening less frequentlly and it is about the only symptom I have. It is sporadic and is not there most of the time.
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Re: Your Experiences with Post Thrombotic Syndrome
Reply #11 by re julieanna
Posted: October 17, 2008 at 07:35
I have to agree with Julieanna. When we get a dvt we damage the vein and just have to put up with it until some amazing miracle is produced. I am amazed really at how little study is done on this subject.
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Re: Your Experiences with Post Thrombotic Syndrome
Reply #12 by Linda
Posted: October 17, 2008 at 23:06
Hi Sarah,
I had pain in my calf recently and I went to the vascular surgeon. A scan was done and nothing was found. I was told that I had venous insufficiency in both legs. That piece of news was something new to me. Although I just turned 60 (hard for me to believe) I consider myself pretty active. I walk alot and do 15 miles on an exercise bike nearly every day. If I sit for too long, I feel pain right behind my right knee which is where the site of the original clot was located. At times, the pain is non-specific and my leg just feels achy.
That could be a result of venous insufficiency.
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Re: Your Experiences with Post Thrombotic Syndrome
Reply #13 by jamie
Posted: June 15, 2009 at 11:24
I had a dvt about 2 years ago and recently my whole leg is swelling when i stand. the severity changes from day to day for some reason. Im hoping it will eventually stop swelling and i can get on with my life again. I was very active before and im only 21 so im really hoping they find a cure. Has anyone had severe post thrombotic syndrome and does it get better over time or worse??
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Re: Your Experiences with Post Thrombotic Syndrome
Reply #14 by Claudette
Posted: June 16, 2009 at 02:10
Hello all
First let me thank you all for having this site and using it. I was just wondering if you could guide me in regards to what I should be asking, doing or insisting on with my docs.

This past Thursday I was told I have a DVT in my left calf just below my knee. This past Friday, after having a phone chat with the doc about an episode of shortness of breath, rapid heart rate and very slight fever which started after I had been in hospital for a D&C this past April(I had a miscarriage) he confirmed that I likely had a pulmonary embolism then. I just thought it was because of the blood loss I went thru. No one told me to look out for anything and no one called me back for 2 weeks to explain and no, foolish me didn't go to the hospital to check it out either. I thought it was from blood loss. After 2 weeks it started to get better. I understand it could have been quite bad but I am a very lucky lady. I had a repeat ultrasound on Sunday to see if it moved at all. I was told it hadn't and it seems to have gotten a bit smaller. The swelling is less.
Now I have to see the doc to see what they are going to do. I was told they don't treat DVT's below the knee. I was told they may do some tests to find out if I have a clotting disorder. Because of the first clot that went undetected and led to the PE I had (9wks ago now) I am more nervous about not being treated for this until they find out if I do have something going on.
I am nervous and I, like everyone, would like to be able to not get freaked out at every pain I get. I have had chest pains for some time they have said is stress. Do I just start insisting that they do extensive testing? Is it worse to insist that they get to testing because of the side effects. What do you wish you had known before that would have helped? I know that symptoms, and causes like injury and different docs will change the type of treatment. Should i insist on some treatment because the clot I have now has no reason to be there unless just starting birth control could do it.
Thanks so much for you guidance
Claudette


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Re: Your Experiences with Post Thrombotic Syndrome
Reply #15 by Claudette
Posted: June 16, 2009 at 02:16
Sorry Sarah, I posted this in the wrong spot. If anyone would like to reply would you mind doing it on the first page where I put this question. I don't want to hijack Sarah's post. Admin, could you remove this from here. I am new to your site.

Thank you
Claudette
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Re: Your Experiences with Post Thrombotic Syndrome
Reply #16 by Natalie
Posted: June 21, 2009 at 15:27
Hi all,
This is fantastic to read all of your experiences!
Four yrs ago i developed D.V.T after the birth of my son, i had 16 clots from my calf to my pelvis, can i just say the most excruciating pain ive ever experienced. I had to give myself Heperin injections for the first week with compression bandaging, then the Warferin for 12 mnths after. Not fun at 21 yrs of age lol. I was told to wear the compression stockings for two yrs or so there after. So after the two yrs i caesed the stockings, my leg was still considerabely larger than the other leg and i still had the usual pain and discomfort but just learnt to live with it.
This past month my partner was sick of me winging about my leg..lol.. so i decided to see a vascular specialist, after alot of blood tests and scans and so on i was told i have severe Post thrombotic syndrome, with reflux..the blood wont curculate up the leg, i also have varicose veins which i was told to never have fixed because they are helping curculate the blood, and i also have early signs of ulcers. All of this and im only 25, the specialist says there is really nothing that can be done to fix it, just to wear the compression stocking, elevate when i can.
Has anyone have any similar experience or information on the subject?
natalie
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Re: Your Experiences with Post Thrombotic Syndrome
Reply #17 by suzanne
Posted: June 21, 2009 at 16:19
hi natalie,is it your dvt leg that is still bigger than your other leg?i was diagnosed with blood clot in leg in nov,im 27 and im wearing my support stocking for 2 years,but its now my dvt leg that is smaller than the other.My doctor says its because of the stocking pulling it it put should correct itself once i stop wearing it after 2 years.But i keep thinking what if it doesnt!so do you wear stocking still then all the time?
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Re: Your Experiences with Post Thrombotic Syndrome
Reply #18 by Natalie
Posted: June 22, 2009 at 12:45
Hey Suzanne,
Yep it's my DVT leg...i wore the stocking for 2yrs then stopped because i had scans and it was all clear of any clots, my leg was the same as yours, smaller than the other, but as soon as i stopped wearing the stocking it swelled again... but im sure u will be fine i had 16 clots in my leg so its pretty stuffed..lol.
Yes now that i was diagnosed with post thrombotic syndrome and reflux i have to wear the stocking forever.
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Re: Your Experiences with Post Thrombotic Syndrome
Reply #19 by jamie
Posted: June 25, 2009 at 15:03
natalie, im in the same boat as you. Im 21 now and my leg swells so much when i stand. Im on warfarin for life and have to wear specially made stockings because the ones they get from the chemist arent working. Ive already had an ulcer on my left leg and isnt as bad as doctors and nurses say they are, however they do take months to heal though. Are all of your clots gone now?? and is it the whole leg, or just the calf that swells?
I still have a few left over and say they wont ever disapear. I was 19 when i had my clot going all the way up from my calf to the groin area. Now i have varicose veins on my stomach!!!!!!! ugly i know lol.
im seeing a speacialist on monday to see if he can do this revoulotionary "neovalve reconstruction" surgery where they fix the valves in the deep vien. So fingers crossed they can do it. Keep me posted on your progress because i only found out how severe my leg was about a month ago.
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