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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number of topics started (4726) - Page 62 of 237
How long on blood thinners?
Posted by Dharma
Last Reply February 26, 2014
Started January 20, 2011 at 01:18
Hello everyone,

I've been reading these helpful post for a few months now. I haven't been able to figure out however if I will require blood thinners long term. I am 42 and developed a calf to groin blood clot from taking birth control pills. I have been on lovenox injections for 6 months now and wear the compression hose everyday. I have noticed a slight decrease in the swelling and I don't have any pain however by the end of everyday my leg is larger than the other and discolored. I am wondering if I will have to be on blood thinners for life? I don't have any clotting disorder and the reseason I got the clot in the first place is gone. I live in Alberta,Canada and we don't seem to be very proactive with treatment so blood thinners and waiting are my only options. I am seeing a hermatologist at the University of Alberta but he hasn't been very helpful with treatment or information.

15 replies...

Who else has a massive DVT?
Posted by Michelle
Last Reply February 24, 2014 at 09:51
Started June 25, 2008 at 13:49
I've been reading through a few posts, and have seen a few others say that they also have had massive DVTs (I believe Cindy was one). I was led to believe from my Thrombosis specialist that I was a very rare case - he said I'm the largest clot he's seen here in Ottawa. Now I'm wondering if I'm no so unique after all.
I was diagnosed with a massive DVT on July 10, 2001 (in labour with my son). Part of the reason it wasn't treated right away was because my midwife thought the baby's head was pushing on a vein, causing a loss of blood flow. Her answer was to massage the leg!
The clot extends from my belly button the entire length of the femoral vein in the left leg - all the way to the Popiteal veins at the back of my knee. That's where they loose it on doppler - they suspect it goes further.

So, here's my question - tell me about your experiences with massive DVT. I still am on coumadin, and likely will be for life. I have very severe post-phlebitic thrombosis (really really sor... read more

25 replies...

Venowave instead of warfarin in DVT prevention
Posted by Stefan
Last Reply February 23, 2014 at 10:00
Started February 10, 2014 at 01:44
In March last year I had an extensive DVT,from ankle to 1/3 of my thigh. I have been taking anticoagulants (first heparin and then warfarin) for nearly 11 months now. The last ultrasound showed that I have a residual clot in the femoral superficial vein (i.e. in the thigh just above the knee). I have two femoral superficialis veins, and the other one has no clots. I have asked 3 different doctors whether I should continue on anticoagulation or stop. Doctor 1 (vascular) told me to stop taking warfarin. Doctor 2 (cardiologist), said that I should continue on the warfarin for few more months while doctor 3 (haemotologist) told me to stop taking warfarin but take instead aspirin. It is clear that while some studies have shown that residual clot can increase the probability of another DVT, others do not. In the end, there is absolutely no way to predict the risk of me having another DVT with any certainty, and could range from 0-30% over the next years. So what can I do to reduce th... read more

1 replies...

Just Diagnosed with DVT after PE 4 years ago
Posted by Tim Hatcher
Last Reply February 21, 2014 at 02:16
Started February 18, 2014 at 18:48
Hi all I have just found this forum and hope you can help me.

Back in 06/09 I was diagnosed with Multiple clots on both lungs with a
partially collapsed lung and a chest infection. All in all a lot to
take in. I was hospitalised for 3 weeks and took ages to recover.

Recover I did, 6 months and lots of tests later I came off warfarin,
was told that they could find no reason and to keep an eye out for any
signs.

Then in Sept 2013 I noticed that my left calf was 1cm larger then my
right, got this checked out and was given the all clear.

December 2013 I was put in a leg brace for a totally unrelated issue
which just hurt that's all I can say leg swelled and pain pain pain.
Nobody could explain.

The Leg brace turned out to be precautionary and came off in Jan 2014.
However the pain in the leg did not subside. Again the leg was swollen
2cms bigger this time but I held off returning to A&E due to the
episode back in the previous September.

Eventually ... read more

3 replies...

Mental health after clotting
Posted by berger
Last Reply February 21, 2014 at 02:02
Started January 7, 2014 at 22:23
This is kind of dark, but... How have your blood clots affected your
mental health, and how do you cope with it?

I was recently diagnosed with my 2nd PE. My first clot happened a
year ago (Jan '13), and since then I've had 2 DVTs and 2 PEs. Prior
to this, I was a very healthy, active 24 year old. No reason has been
found for my clotting-- no FVL, APS, etc.

I have found myself very anxious. I no longer sleep thru the night
but wake up every hour or so. I didn't even know I had the 2nd one; I
thought it was the flu until I had a chest xray and then CT. 1 in 3
PEs are fatal and, well, I'm up to 2. I can't stop worrying that my
luck is going to run out, and I'm scared of dying in my sleep. I want
to get an IVC filter, but for complicated reasons that is not an
option at this time. What can I do?

5 replies...

Running after a DVT and PTS
Posted by Sarah
Last Reply February 20, 2014 at 15:02
Started September 16, 2010 at 19:41
I was an avid runner, even came in third in a marathon that climbed over 3000 feet, before I developed a dvt two months ago and appear to now have pts. Right now, I can barely walk, but I was wondering if anyone out there has been able to get back to running with pts.
Also, has anyone had trouble bending their knee after a dvt? I haven't been able to bend my knee past 90 degrees for two months now. It makes life difficult.

14 replies...

Clotting whilst on Rivaroxaban
Posted by Lisa
Last Reply February 20, 2014
Started February 17, 2014 at 18:32
Hi all
I wondered if anyone has experience of or knows if it is still
possible to clot whilst on Rivaroxaban?
I have a history of proximal dvt in right leg in 2007 and bilateral
PE's in 2012 so am on it for life.
I've recently developed the normal signs in my same leg as below,
swollen, hard, painful and heavy. Im booked in for a scan on thursday
but wanted to k ow if others have clotted whilst on coags. If so do
they change your treatment etc?
Thanks in advance :-)

6 replies...

Over compensating other leg
Posted by Paul
Last Reply February 19, 2014 at 21:00
Started February 18, 2014 at 15:18
Hi there
I'm 33 yr old and was diagnosed with a DVT in my left leg just over 2 weeks ago...
The clot runs from the bottom of my calf to the top if my thigh so is quite a biggy!!
I've been on riveroxiban to treat the clot and while the pain was unbearable at
times it's starting to get more manageable so hopefully the clots clearing :-)

My question is I've obviously been overcompensating on my right leg (I'm 6'8"
and over 17 stone) and I have what feels like what could be a muscle strain but is
just above my calf behind my left knee... This surely couldn't be another DVT with
me having been in anticoagulants for the past 2 weeks?!?! I'm still taking them
obviously! Might just be paranoid but can't be too careful!

Also I'd be very interested to hear about people experience with the NHS re.
aftercare. When it came to diagnosing and treating I was so impressed by them
but have a bad taste in the mouth as I've effectively been left by the side of the
road with... read more

3 replies...

been in pain for a month, still not sure
Posted by snoo
Last Reply February 18, 2014 at 21:51
Started February 13, 2014 at 23:30
tried to convince myself it's maybe nerve pain or something but it
just seems so unlikely.

my left leg started hurting again and the pain is back in my calf,
too.

the calf pain feels like a muscle cramp in the back, and shin splints
in the front. the upper leg pain is on the outside of my thigh
(intermittent, feels like an ache) and also on my inner thigh and up
into my groin, both of which often feel burning, stabbing or shooting,
occasionally vibrating (? donít know if that's a good description).
the groin discomfort has been the most recent and long-lasting, but
usually it's more of a sensation that doesn't hurt.

I had legitimate muscle cramps in the back of my thigh and butt the
other day, after standing in the garage for over two hours, but
they've gone away. when I was doing that, though, I sat down once and
saw a spot on my calf pulsing/throbbing through my leggings. I showed
my brother and he was kind of disturbed by it. :/

itís been a mo... read more

7 replies...

Pantoprazole and Warfarin
Posted by Christine
Last Reply February 18, 2014 at 20:46
Started January 20, 2011 at 20:37
I am a 44 year old female who is on life time warfarin.
I had 5 pulmonary embolisms from a DVT in 2007 and
have been on warfarin since then.
Currently, I was prescribed Pantoprazole.
I am looking to hear from individuals who have taken
this pill long term or short term alongside warfarin/coumadin.
Did it effect your INR's? if so, were you too high or too low?
Also, did you take your warfarin at the same time as your pantoprozole
or seperately? has this medication helped you ? Last question: has anyone developed GERD/acid reflux/ SINCE taking warfarin?
Thank you!
Christine/Canada

2 replies...

Flying
Posted by donna
Last Reply February 17, 2014 at 12:08
Started June 14, 2007 at 09:04
Hi, my husband David was diagnosed as having 2 clots one in his calf and the other in this inner right thigh. He had Heparin for first 5 days followed by Warfarin. He is currently on 10mg/day and his INR fuctuated between 1.8 and 2.6. Currently at 2.1 (he forgot to take one of his doses last week) whch affected his INR. His company now want him to fly on a short haul flight from Aberdeen to Teeside. I am very alarmed about the thought of his flying again especially with his INR not having been consistantly stable. Any advice would be greatly appreciated. We are at loggerheads about this as he wants to go and I don't want him to go!!!

57 replies...

Can you get a clot while on innohep
Posted by EmmaRaw
Last Reply February 17, 2014 at 06:22
Started February 15, 2014 at 15:06
Hi I am currently 16 weeks pregnant and on innohep as I had clod in my last
pregnancy. I am experiencing bad leg pain in both my calfs. Can I get dvt while in
heparin?

1 replies...

Period after menopause on warfarin
Posted by DB
Last Reply February 16, 2014 at 22:17
Started February 1, 2014
I haven't had a period since October 2012. Had knee surgery the day after Christmas and a PE in both lungs the day after that. I've been on warfarin for exactly a month and started my period again! What the heck? Anybody know if this happens? I went to the ER and they referred me to a gyno. The period is a little heavier that normal would have been, but what would have made me start again after more than a year?!

2 replies...

DVT Problems
Posted by Chris
Last Reply February 15, 2014 at 17:43
Started July 19, 2012 at 03:43
Hi, new to this forum. I am a 21 year old college student. I was your typical college kid. I played lacrosse for most of my life and was very active. September of 2011 was when my life changed forever. I was at college when I was diagnosed with a bilateral dvt. I underwent a procedure to dissolve most of the clot and was placed on bloodthinners for 6 months. The reason for developing the dvt is still a mystery. I had no injuries, no genetic problems (factor v) or anything that they check for. The only thing I can think of is that I was chronically dehydrated and didn't realize it. They said that the clot had been building up for quite some time. For lacrosse I was on a lot of 5-6 hour car drives one way and 5-6 back home. That could have also contributed. The only other thing my specialist pointed out is that I have narrow veins that are a congenital issue. Also those that know me know that I sit in a lot of awkward positions that may limit blood flow, don't know if this causes clot... read more

7 replies...

Father died of DVT/PE Am I at risk?
Posted by Mark
Last Reply February 14, 2014 at 23:51
Started February 14, 2014 at 22:13
Hello

My father died 9 years ago from a pulmonary embolism/DVT

My father had an operation to remove his gangreous appendix

He had internal bleeding and required extensive surgery 6 times due to
complications

My father lived 4 years after his operations, he died suddenly and the
blood clots (PE) was found to be the cause

I am trying to find out if I am at risk, I had my ruptured appendix
removed when I was 10 years old, I am now 28

I suffer from bipolar disorder and take a fairly high dose of seroquel
XR and I understand this medication has been linked to blood clots. I
also suffer from chronic pain for which I take morphine and fentanly
pain patches

Could anyone inform me if I have an increased risk of developing blood
clots?

Thanks

Mark

1 replies...

Dvt? Ultrasound negative
Posted by Gibbs
Last Reply February 14, 2014 at 16:51
Started February 14, 2014 at 14:12
Any advice if you had or have dvt? Ultrasound negative but right leg so tender
touch I cry like a baby and it is hip, upper leg front, knee, calf both in and out,
ankle, and top of foot. Hurts to walk, drive, sit unless legs are elevated. Also leg
weakness, 'gives out' on stairs. 3rd spinal surgery in mid December with fusion
and the longest I have had to be on rest which also means weight gain and that
doesn't help any body parts. My surgeon suggested X-rays and I think he meant
the veneography. Right now they increased the pain killers, increased the muscle
relaxers, and increased the neurontin. My back feels better but that foot still
hurts like heck when I try to walk and if I standfor five minutes it goes upwards
past the knee. Not mild pain, throbbing and stabbing. This was my 4th surgery
overall this year. I welcome any opinions on if I should wait it out and see how
the meds do or if I should ask my doc to pursue

1 replies...

Dvt pain
Posted by April
Last Reply February 14, 2014 at 02:06
Started February 10, 2014 at 19:00
I'm wondering if anyone can tell me how long they had pain before finding out it
was a dvt?

6 replies...

Feeling weak, off balance
Posted by rachel
Last Reply February 12, 2014 at 13:10
Started February 6, 2014 at 10:10
I had subclavain stent surgery a few months back and was diagnosed a week later with a blood clot in my jugular was put on warfarin and have been on it for 5 monhts. I have notied hair loss and have the runs but the last few weeks I have had several episodes of feeling off balance and almost like I have had a couple of drinks. Not dizzy but sort of lightheaded. Doctor said that isnt a side effect of coumadin. I disagree totally. Has anyone else felt like this?

3 replies...

i think it's something more than cramps
Posted by snoo
Last Reply February 11, 2014 at 03:27
Started February 1, 2014 at 23:40
hi,

I'm female, 20 years old and I'm pretty overweight and I've been just
kind of hanging out in my bed for a while, laying in the same position
for hours every day (anxiety and depression is fun!!!). a few weeks
ago I started getting a tightness in my left calf, sometimes it would
feel stabbing or sharp, sometimes it throbs. later on it felt like
there was glass in there.

I called a nurse hotline that my insurance company provides, they kind
of said 'it's probably dvt, see a doctor if it gets worse' and it did
get worse. I felt the pain in my knee, the back of it, and my knee
would kind of 'bubble' in a visible way, like my vein was ?? clogged
up or something. then I started feeling the pain in the back of my
thigh, sometimes under my butt and sometimes in the inner part. so I
went to see a doctor at a clinic for this, and another issue, a couple
of days ago. they said 'it can't be dvt because it hurts all over your
leg and you're also too young' and... read more

29 replies...

Stopping Xeralta
Posted by Linda
Last Reply February 11, 2014 at 01:57
Started February 11, 2014 at 01:57
I am Day 1 minus my daily 20mg Xeralto tablet after 12 months 2 weeks.
Excited but also terrified. The haematologist was very nonchalant about it, the blot clots
have dissolved and I am more mobile.
But I feel as though my Life's security blanket has been lifted and I want natural
alternative ideas please to keep the blood flowing?
What R other's experiences with stopping Xeralto?


0 replies...

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