DVT deep vein thrombosis forum

Welcome to the DVT deep vein thrombosis open discussion forum. Please feel free to start a new topic or reply to any existing topics. No need to register to use this forum. Just feel free to share your experiences of DVT.

One new option for people who have been diagnosed with a blood clot is Thrombolysis which uses medicines and devices to remove the blood clot. While not risk free, and not offered universally, the following doctors and institutions do offer this. If you think you may be interested, it is important to act quickly. Blood clots harden within the first several weeks, making it much more difficult to remove the clot. This procedure has risks and you should discuss with your doctors the tradeoffs for your particular situation.
Doctors and Hospitals offering Thrombolysis - Link to Doctors and Hospitals

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Posted by Diane
Last Reply October 28, 2014
Started February 2, 2008 at 02:46
Hello to all posters who have shared their diagnosis of May-Thurner Syndrome.

I am thankful to this forum for bringing us together, but it has become clear to me that we need our own forum. Our MT situation is quite rare and because there are many unknowns that continue to trouble each of us about our future, such as the longevity of our iliac vein stents, I feel we need our own forum.

I have developed an easy to navigate forum that is by invitation only. All you have to do is send me your e-mail and a brief description of yourself (name and city/country) and I will send you an invitation to our forum. It is on Google Groups so if you are serious about joining it wouldn't be a bad idea to join Google Groups first as it is our umbrella website. Easy to sign up.

My e-mail, dedicated to May-Thurner is: woodcreek12@aol.com
I look forward to hearing from you if you are interested in joining our unique support group for May-Thurner Syndrome.

40 replies...

Lovenox and fatigue?
Posted by zara
Last Reply October 27, 2014 at 21:14
Started January 11, 2007 at 23:53
I am wondering if others have found fatigue to be a side effect of Lovenox injections? This is my third time doing the Lovenox injections but the other times I stopped at 10 doses/shots. This time I am on about my 14th shot of a 20-shot course and I am SO TIRED. It's not like a sleepy, not enough rest tired, I just want to lie down all the time, almost like having a mild case of the flu. I was wondering if others have experienced this.

26 replies...

Your Experiences with Post Thrombotic Syndrome
Posted by Sarah
Last Reply October 27, 2014 at 15:41
Started 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.

93 replies...

Treatments for Acute & Chronic DVT
Posted by Dr Mark Garcia
Last Reply October 27, 2014 at 14:28
Started January 12, 2014 at 01:41
It KILLS me to read this site and story after story of patients suffering from both acute or
chronic DVT and PTS. We (treating physicians) are trying to change that and help you all. We
have made great strides over the past couple of years but it will take continued efforts by
both doctors as well as the patients needing our help. For those with acute DVT (< 14
days), I urge you to make sure that the appropriate anticoagulation is given and close
follow-up is provided until the clot is resolved. If you are interested in helping us
determine the BEST treatment, please consider enrollment in the ATTRACT Trial. For those
suffering from chronic DVT and PTS, we at Christiana Care have also successfully treated
>200 patients with chronic DVT, even up to 13 yrs old. Yes, there is help and it can work,
maybe not for all, but for many, your quality of life can significantly improve. We should be
starting a chronic DVT trial this year that will be aimed at treating patien... read more

20 replies...

Blocked Vein In My Left Leg
Posted by Sarah
Last Reply October 27, 2014 at 11:34
Started January 23, 2008 at 20:17
Hello I has a dvt in my left leg after coming back from honeymoon 9 years ago, I was told that the vein in my left leg is permantely blocked, and that I will be ill all my life I was 22 at the time. Life is unbearable most days my leg swells can hardly run and feel compelety useless with my kids, Im in agony most days, is their any think that anyone can suggest that can help relief the pain and make me feel happy again

7 replies...

"What Symptoms Should Prompt Me & My Doctor To
Posted by Sharon
Last Reply October 27, 2014 at 07:02
Started June 2, 2008 at 04:46
The most common question from those who have not been diagnosed, is in one form or fashion, one wording or another--"Does this pain I have mean that I have DVT or should be tested for DVT? The next question is, "What tests should I have?" The most common question for all of us w/ confirmed DVT is, in one form or another--"Am I clotting again or is this new pain a result of Post Thrombotic Syndrome" (damaged valves in the vein from past DVT).

I wrote the following in response to someone wondering why their doctor refused to test them for DVT when they had symptoms. Thought I would post it under its own topic so everyone can chime in. I ask specific questions of those who have been diagnosed w/ confrimed DVT/PE at the end. I have not had a PE, so I think it might be good to have a similar article on that topic if someone w/ experience and good doctors as advisors can write that one. I hope this info helps others:

You are wondering why the doctor did not test youwith a Dopplar U... read more

26 replies...

DVT Swelling
Posted by Mary
Last Reply October 26, 2014 at 14:31
Started October 26, 2014 at 14:31
I had DVT from bottom of calf to groin in right leg and PE in both lungs a month ago. Still not stable on warfarin. I keep asking DR why my right leg is three times the size of my left one and he says it will take a long time for that to go away as I may have extensive damage to the valve in the vein. However he tells me I can't wear compression stockings yet. I see in a lot of these forums patients are wearing them after a very short period of time after the DVT. The only relief I get is when I lay flat and keep leg elevated the swelling goes down considerably. But the minute I stand up my leg blows right up again within 20 seconds. I'm told I should be active and I stay on my feet as much as I can until my leg goes numb. Does anyone know is this fluid or blood that collects in the leg. It gets so bad that I no longer can feel my toes or foot. I'm now worried about nerve damage. I was told not to use heat on it. Has anyone else had this severe swelling and what helped if anything.

0 replies...

could this be a DVT?
Posted by Ethan
Last Reply October 26, 2014 at 02:31
Started December 13, 2008 at 03:45
Hi, I'm asking this question for my wife. She's had leg pain for about 4 weeks now and is concerned that it could be a DVT.

It started off in her right leg focused primarily behind her knee cap and the back of her leg behind the knee. Over time the pain has moved both up and down her leg, either down to her calf or up her groin. It's both a burning and aching pain. It isn't always there and it gets worse at night.

She waited about 7-10 days before the first D Dimer test and it came back negative at around 186 (the cutoff level for the test is 500). The following week she had another D Dimer and that came back at 289. In addition she has had 3 EKGs, all of which have come back normal, if not slightly fast. Her blood pressure has remained normal throughout all of this.

Yesterday she went into the ER for dehydration & tachycardia (she also has systemic mastocytosis which could cause these things) and received two litres of fluids. In addition, her PCP put her on 20mg of... read more

4 replies...

Trading Warfarin for natural anticoagulants?
Posted by Ken
Last Reply October 25, 2014 at 03:00
Started June 27, 2011 at 14:11
Has anyone here had the courage to substitute their Warfarin prescription with fish oil or nattokinase, or any other natural blood anticoagulants with success? The only way to see if you don't get another blood clot is to actually quit taking the Warfarin and start on the natural thinners. And I suppose that if your calf starts to swell or hurt you can have 5 days worth of Lovenox immediately available by your side for your rescue. My hemotologist says "that's like playing Russian Roulette". I've tried going off Warfarin once albeit with no change in lifestyle and no blood thinners and I got a new blood clot in about 10 days. My calf started to swell and hurt, but I noticed it right away, verified it with the Ultrasound and immediately went to Lovenox and Warfarin. Now I'm thinking about quitting the Warfarin again, this time with lifestyle changes (more exercise and moving) and natural blood thinners. It didn't seem particulary risky last time I quit taking the Warfarin. Doe... read more

24 replies...

Posted by CC
Last Reply October 23, 2014 at 10:18
Started November 23, 2011 at 18:53
I received my one and only acupuncture treatment and 3 days later had DVT in both legs. Does this sound familiar to any of you?

6 replies...

Can calf dvt be missed by US
Posted by Esme
Last Reply October 23, 2014 at 04:31
Started October 21, 2014 at 15:31
Has anyone any experiences to share?
How accurate is US in detecting calf dvt?
I've previous history of DVT, usual symptoms and positive d dimer but nothing found on US today so no follow up or treatment being continued.

1 replies...

Posted by WilliamMl
Last Reply October 23, 2014 at 01:55
Started October 23, 2014 at 01:55
Audi A3 Ауди А3

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Audi A3 – первая компактная модель известного немецкого автопроизводителя, пришедшая на смену устаревшему автомо... read more

0 replies...

ultra sound test would it show blood clot?
Posted by bev
Last Reply October 22, 2014 at 23:44
Started January 23, 2010 at 13:49
Plz help at my wits end had severe calf pain for 3 weeks now had an ultra sound 10 days ago and came bk negative no clot. Should i b reassured by this?

38 replies...

Portal Vein Thrombosis
Posted by Dana
Last Reply October 22, 2014 at 20:03
Started September 25, 2006 at 18:10
In July of this year I was diagnosed with a blood clot blocking my portal vein (to the liver) My symptoms were pain and extreme nausea. The ER docs misdiagnosed this as gallstones, but 2 days later my GP ordered a CT with contrast, which found the clot. I still have pain, although not as severe or as often. I'll be on blood thinners for 6 months I'm told. My only risk factor was the birth control pill. Since this is so rare, I feel as though none of the doctors really know what to expect so far as a prognosis or complications. A repeat scan 5 weeks later showed no change in the clot. Does anyone here have this condition? I would be interested in hearing your experience.

78 replies...

second clot, what will happen?
Posted by mmims
Last Reply October 22, 2014 at 14:51
Started October 20, 2014 at 14:04
Hi, I had first DVT about 5 years ago. Just been to hospital today with new leg pain for nearly two weeks, some swelling ect and I have had a positive d dimer again. Scan tomorrow.
I'm all nervous again but I'm just wondering now if this means long term anticoagulants?
I was on warfarin last time and heparin during pregnancies but they have put me on Riboboxan? Today.
Does anyone have experience of this anticoag?

13 replies...

Posted by Jan
Last Reply October 21, 2014 at 22:53
Started October 13, 2014 at 02:40
Almost 5yrs ago I was diagnosed with an
occluded DVT of the left leg and abdomen.
When CT was performed I was also informed
I did not have a IVC. I had thrombolysis
preformed 4 days after clot formation.
Only to have it fail and I reclotted.
Dr's are now going to do a MRI to see if I
am a candidate for some type of bypass
surgery. I am interested in seeing if
anyone else was born without a Inferior
Vena Cava (IVC)? If so what type of
treatment have you had. My pain in getting
worse by the month. I am at a loss I don't
want to do anything any more. Laying
around legs kill me if I am up doing
things I am also in pain. I am just
looking for anything that could help me.

3 replies...

shoe Lifts
Posted by AngeloTuh
Last Reply October 21, 2014 at 21:29
Started October 21, 2014 at 21:29
Other options include taking your shoe lift inserts along when you buy shoes and searching for a brand with more stretch than your normal shoes


0 replies...

Newly diagnosed
Posted by Kay
Last Reply October 21, 2014 at 21:19
Started October 16, 2014 at 21:37
I was diagnosed on Saturday, given Lovenox, and sent home with xarelto. I never
had swelling, redness or warmth. My clot is partially occluded by my knee in left
thigh. I have kept it elevated all week. Today I sat up more with it on pillows and
got up more often. Tonight it started burning again and feels a bit warm. Is this
normal for over doing it a bit? I am worried since I didnt have warmth before.

3 replies...

how long does the pain in the leg last
Posted by Angela
Last Reply October 21, 2014 at 17:31
Started July 3, 2010 at 21:38
i had dvt in my left leg abt a week ago and was hospitalized for 5 days, am now on warfarin. i would like to know how long it will take for the pain in the leg to go away cos the pain is simply unbearable. would also like to know when i can go back to work. has any one gone through the same out there. pls help

42 replies...

Playing contact sports on Warfarin?
Posted by Steve
Last Reply October 21, 2014 at 16:58
Started August 3, 2007 at 15:40
Hi everyone,

I am on lifelong warfarin and have been advised not to play contact sports. I am only 31 years of age and find this advice hard to accept, as I loved playing football. Has anyone out there had any experience or advice contrary to the usual no contact sports?

4 replies...

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