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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Anyone else taking Xarelto?
Posted by Ken
Last Reply September 14, 2014 at 21:09
Started June 6, 2012 at 09:38
Dear All
Basically, two months ago, I had a knee operation and ended up with a DVT from ankle to my thigh in my same leg as the knee operation
I have been put on the new drug Xarelto which my Vascular Specialist (referred to him after surgeon detected DVT a fewdaysafter the Operation) says it cuts out the need to monitor blood level continously etc. and is a much improved medication for DVT
Does anyone else take this drug? Your experiences would be most appreciated
For sure it will not help the pain, as it is still awful when standing and even sitting in office etc.
I wear full length stockings, still have a swollen leg and what look like fluid allaround my knee surgery area, which the surgeon says he might drain, but I am reluctant to let him near me again!
I assume from the sit I have perhaps years of pain to come
Feedback welcomed
PS I go to gym, do not smoke and al the rest, but have to fly long haul twice a month - frightended to death I have to say also

141 replies...

Peeing at night a bunch
Posted by STaylor
Last Reply September 14, 2014 at 18:55
Started September 14, 2014 at 12:06
Had DVT with bilateral PE a few months ago. I drink a bunch of water during the day which seems to gather in my leg and lower extremities. At night I'm up going to the bathroom 6 or 8 times. My doc says it's because of all the fluid I'm retaining. The disrupted sleep is getting difficult to cope with.

Anyone else have this issue??? Any solutions???

3 replies...

Xraleto + Pycnogenol
Posted by Steve
Last Reply September 14, 2014 at 11:57
Started September 14, 2014 at 11:57
Has anyone used the combination of Xarelto plus Pycnogenol? If so is there an increased risk of bleeding?

Has anyone used Pycnogenol with or without a blood thinner for DVT and/or PE?

I am 3 months out from my DVT/PE and still experiencing a great deal of leg swelling even with a compression stocking. Just wondering if adding Pycnogenol would have any benefit...

0 replies...

Can paddling trigger DVT
Posted by kayaker
Last Reply September 13, 2014 at 16:10
Started September 13, 2014 at 05:37
3 days ago (10 Sep), after a week of persistent muscle pain deep in my right calf I was encouraged to go and show it at the hospital. They first took a blood test that showed some signs (?) of possible thrombosis and the diagnosis was confirmed by (doppler) echography. Several small clots in the area where I had the pain. I was given a heparin injection at the hospital and prescribed 3 months Xarelto (20 mg) along with compression socks.

I first thought it was just normal muscle pain or irritated achilles tendon. I only started wondering that it could be something else when I took 800 mg ibuprofein before going to bed and in the morning the pain was almost gone. It then returned as soon as jumped out of the bed and started walking around. There was no swelling nor redness of the skin.

Like many of you in this forum, I coulnd't believe that I would have a DVT that (I though) only affects elderly or inactive/overweight/smokers....

I'm 48 and former triathlete (10hr ironm... read more

3 replies...

Posted by Lisa
Last Reply September 13, 2014 at 11:39
Started August 23, 2007 at 20:38
Is anyone taking Nattokinase or know of any side effects of taking it. I just want to hear straight from a person whose taking Nattokinase what it's like. I found this site

about it and I can't seem to find anything bad about it. I just want to know anyone whose currently taking it, what you think about it and what kind of side effects you have had from it?

155 replies...

5 weeks post DVT dx, & clear on ultrasound?
Posted by Nancy
Last Reply September 13, 2014 at 04:54
Started September 8, 2014 at 11:13
Hi everyone,

5 weeks ago I was dx with a DVT- posterior tibal mid proximal (I hope that makes sense.)
Because I was 20 something weeks pregnant, they put me on Lovenox and I saw a hematologist a few days later who took my levels and told me light duty for a month.
I was starting to feel better but then my calf started aching randomly- at the grocery store, at night. There didn't seem to be a pattern for it. I saw my dr again on Friday who immediately ordered another ultrasound to make sure the clot wasn't growing.
I went in today and the tech saw NO EVIDENCE of a clot in my calf. I asked the tech if it was possible for a clot to be completely gone after a month and he assured me it was- however why am I still having pain?
Has anyone heard of a DVT being completely gone after a month on ultrasound? Something just doesn't sound right to me.
Thanks! :)

6 replies...

Sex drive and warfarin
Posted by Lucy
Last Reply September 12, 2014 at 16:21
Started January 14, 2010 at 01:12
I have been on warfarin for about 8 months and have had zero sex drive since. Has anyone else had this side effect, and did you get your sex drive back after you came off warfarin?

Sorry, this is a more risque topic for this forum, but I want to know I am not alone, and want to know if it is going to come back! I am only 26!

Looking forward to any answers,

71 replies...

is it possible to have a good outcome?!!
Posted by Philippa
Last Reply September 11, 2014 at 23:44
Started September 4, 2014 at 16:35

I had a proximal DVT in June, last year. I've been on warfarin for 7
months, then off. I have protein S deficiency but doctor thinks it is
better be off warfarin because it is too dangerous, she thinks the
dificiency is not too dangerous. Anyway, I've found this forum and I'm
glad I did because I have not much information on this, no family
members had it so far (thank goodness). But I'm so, so scared from all
the information I've read!!! Almost NO GOOD OUTCOMES:(. One has to
deal with pain or swelling or both or tightness or a swollen leg or
all of these together. Isn't that possible that one can heal for
good?! I'm 25, female and I was hoping to wear my shorts and skirts
being proud of my legs as I was before:(:( My leg is larger than the
other one and the calf gets very tight if I take the compression
stockings. Will I have to wear these all my life?! Oh my God:(:( When
all this happened, the vascular surgeon told me that my leg would be
ok, I j... read more

5 replies...

DVT and symtoms dizzy, out of breath
Posted by Wes
Last Reply September 11, 2014 at 23:30
Started September 12, 2006 at 10:17
Hi, I am looking for any information about having symtoms like being dizzy, out of breath, chest and arm pains.
If I do a minemum of work such as bending down and getting up I will be totally winded within 1 -2 min. I can be rested go up two flights of stairs I breath heavy and my legs feel like lead weights. I have had my heart checked wiht stress test, blood work and a angiogram.(I think thats what its called when the run the camera up your leg to the heart, and that was good. I had my DVT to my leg 2 years this Thanksgiving. The pain never left. They did not disolve it, just left it do what ever. If anyone has or knows anyone with this sort of symtoms and being related with DVT I would very much appreciate it. Thanks

20 replies...

Blood type and DVT -- Do they matter?
Posted by N
Last Reply September 11, 2014 at 21:16
Started February 28, 2010 at 15:00
Research out of the Netherlands has shown that your blood type can increase the risk of suffering deep vein thrombosis (DVT). Blood types in humans include A, B, AB or O. The study showed that people with blood type A, B or AB had an increased risk of DVT.

Researcher, Dr Vania Morelli, from the Leiden University Medical Center in The Netherlands, said "A non-O blood type strongly increases the risk in people who carry a variant of a protein (called Factor V Leiden) involved in blood clotting. This variant protein is found in around 3% of people of European descent".

"Our research suggests that information on blood type may have a role in the management of DVT, especially in carriers of this variant protein. It is obviously important to know what your blood group is!" said Morelli.

Dr Morelli will present this research at the XXth Congress of the International Society on Thrombosis & Haemostasis in Sydney tomorrow.


Throughout history, cocoa has been described as a ... read more

5 replies...

Compression stockings
Posted by Mike in NY
Last Reply September 11, 2014 at 12:49
Started November 19, 2008 at 19:22
I was diagnosed with severe DVT from groin to both ankles and also renal thrombosis in April. My complete story is on here in a couple of places under just Mike. My question is related to compression stockings. Anyone have any tricks for keeping knee high stockings to stay up. I have to pull up my pant legs and adjust mine all through the day. Originally I was told that I had to wear thigh highs but I am a very large guy (6'3" 280 lbs) and cannot find a pair that fit unless custom made and I live in a very rural area and the closest place to get them custom fitted is 3 hours away. My Dr gave me 2 pairs of xxl knee highs and told me to try them. The most severe of my DVT was in my lower leg. They seem to fit ok but roll down alot and start to feel like they are cutting off circulation. Any tricks or ideas would be great. Thanks in advance.

30 replies...

Successful feminine products for periods
Posted by KDubs
Last Reply September 11, 2014 at 06:27
Started September 7, 2014 at 09:57
Hi everyone,

My question is, what kinds of feminine products do you use successfully with
your heavy period? Also, how do you manage pain without being on ibuprofen?

I just started Xarelto a month ago and my period will start any minute. I was on
the pill to control heavy bleeding and a 7-9 day period already. Now that I'm off,
I'm terrified of what's coming. I can't use tampons, so anything else is helpful

Please, please do not post horror stories of almost bleeding to death. I am
freaked out enough as it is from other posts.


2 replies...

32 year old another DVT nod traveling on Xarel
Posted by Thomas
Last Reply September 10, 2014 at 09:53
Started September 9, 2014 at 14:54
I wonder why the DR said not to wear compression socks for my flight.. I'm
taking 4 fights this week and have Been on Xarelto for 4 days. My flights are
about 2 hours each and they said to just walk a lot.

1 replies...

Another DVT at age 32 on Xarelto and traveling
Posted by Thomas
Last Reply September 10, 2014 at 01:37
Started September 6, 2014 at 18:41
I had a car accident in October and developed a DVT within about 2 days (actually
3). I had to take Lovenox injections twice a day for three weeks and Coumadin for
9 months. The Dr took me off Coumadin in June or July and switched me to
aspirin. This last Monday, I started feeling the beginning of a new clot. I had an
ultrasound done yesterday and it turns out the clot, which my DR said was gone
after a d-dimer blood test, was still there. Additionally, I have a new clot forming.
The Hematologist started me on Xarelto (15 mg twice a day for 21 days then one
30mg tab a day after). This is day two on Xarelto and I'm just feeling strange.
Tired may be the only way to describe it. Any advise for the new patient taking
Xarelto? I have to leave the country for work for the remainder of the week and
I'm a little nervous even though they said it was OK for me to take the two short
flights. I don't want to over bleed, be too tired to work or die from this (as ... read more

4 replies...

Heat or ice for chronic dvt pain
Posted by Jennifer
Last Reply September 9, 2014 at 21:58
Started September 9, 2014 at 21:58
Hi all- have been getting conflicting advice on pain management for my 9 and 4
month old chronic clots. I like to ice my leg before bed. My hemo was horrified by
this. My vascular surgeon said heat or ice ( he didn't give it too much thought at
all) what are you all doing?/ have been told is safe for daily pain? Thanks!

0 replies...

Xarelto and fatigue
Posted by JimG
Last Reply September 9, 2014 at 08:50
Started September 9, 2014 at 08:50
Had my second DVT in three yrs this past May. Been on Xarelto ever since. My concern is fatigue when doing much of anything beyond basic activities. Last time I was on Coumadin and recovered completely. I think that Xarelto is messing with my blood chemistry or cells in a way that constantly drags me down. Anyone know of studies on this? Or experienced this themselves? I like the convenience of Xarelto, but I don't like the constant fatigue. Does anyone take just 10mg for DVT?

0 replies...

Greenfield filter pain
Posted by marie
Last Reply September 9, 2014 at 03:08
Started March 9, 2008
Hi there, I was recently diagnosed with May-Thurner and Factor II mutation complicating the matter. I had a procedure done a couple of days ago to place a stent in the iliac vein and a greenfield filter in my IVC. Has anyone experienced severe right flank pain after having the greenfield filter put in? My doctors did a CT scan to make sure that there was no internal bleeding and it looked normal. They suggested that the pain may be from the procedure or the filter. Thank you for your input

29 replies...

Portal Vein Thrombosis
Posted by Dana
Last Reply September 8, 2014 at 22:50
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.

76 replies...

Venogram? Too risky?
Posted by Jennifer
Last Reply September 8, 2014 at 08:47
Started September 3, 2014 at 11:24
Hi all- ( and Stefan :),
I saw a new vascular surgeon at tufts medical center in Boston Ma.. Had
New ultrasounds looking at clots ( all distal 9 monthand 4 month old clots in
tibial and perineal veins)looking for hematoma & venous reflux.... I went there
seeking answers for my severe burning leg pain that came back after I had much
improved. I also have a difficult time standing for any length of time and I NEED
to elevate when sitting... Hematoma was ruled out...clots were all still there but
some recanalization had occurred. I was told it is difficult to test for reflux below
knee but nothing was refluxing back up into the popliteal so that is a good
sign.....Soooooo why do I have such debilitating new pain? This doctor wants to
schedule a veinogram next to see if there is an obstruction higher in my body that
was not seen on ultrasound...he said my symptoms sound like claudication and
he'd like to look for blocks that are hindering the blo... read more

11 replies...

DVT vs. muscle/nerve pain
Posted by Lindsay
Last Reply September 7, 2014 at 21:19
Started February 4, 2011 at 04:31
Is there a way to tell the difference between pulled muscle or pinched
nerve pain and DVT (no swelling, no heat)? Is it a different type of
pain? Specific location? Can you tell by palpation?

3 replies...

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