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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dvt protein c deficiency
Posted by philip
Last Reply October 29, 2014 at 12:17
Started October 29, 2014 at 12:17
Hello i would just like other readers know. after my
second recurrence of dvt in bothe legs and pe.

it took a new doctor to find out i had protein c
deficiency. which is a little rare, but causes dvt. it
will be picked up in blood test.

just letting others know whow have a recurrence
your doctor must look into why. 6 months of
Coumadin will not prevent long term recurrence

0 replies...

Pain 4 years after DVT
Posted by Tony
Last Reply October 29, 2014 at 12:03
Started May 10, 2012 at 01:59
Hi folks,
I had extensive DVT in my right leg around 4 years ago and got through
it after 6 months of wafrin etc....ever since, this leg has always
been a little swollen and aches sometimes...all to be expected, so my
doc told me. Basically my vein system is damaged.

In the last week that same leg is aching in all the areas that the
previous DVTs were most effected.

Last week i had a to walk around an hour and I was in my hard, work
shoes which may have contrubued....i have also been doing some heavy
leg work at the gym..

i guess i am just trying to work out what has caused these pains...

Anyone else have similar experiences?

This is a great forum!

Tony

8 replies...

think i might have dvt
Posted by john
Last Reply October 29, 2014 at 05:12
Started July 7, 2014 at 08:02
justcome back from edingburgh with swollen calfs and redness i am sirpose to go on hiliday to sspain on wednesday at the docs tonite not sure if i can fly

2 replies...

May-Thurner Syndrome
Posted by Cheikh
Last Reply October 28, 2014 at 01:24
Started September 29, 2008
As of 9/21 I have been diagnosed with May-Thurner Syndrome. Has anyone else had this diagnosis and can share their experience and treatment. I had a stent placed in my abdomen and a filter in my chest to keep clots from moving higher I am having Lovenox injections (only 3 to go) and taking Coumadin. Having my INR tested every 3 days currently 2.1. I plan on seeing a specialist ASAP as my treatment was at a mid-size community facilitythat admitted they had only treated one other patient with this syndrome(he was 80) and stated that this was very rare to them. Thanks to a young dr in the er who was perplexed by my not fitting profile of my symtoms (53 yr male, slim, no history etc) he orderd a cscan and detected the artery compressing the vein in two areas. They placed a stent in my abdomen to open the vein and as for the compressed vein in my groin area they said could not put a stent there as to much movement. This is all new to me and my drs. here know little about this syndrom... read more

4 replies...

MAY-THURNER SYNDROME / ILIAC VEIN COMPRESSION
Posted by DIANE PETERSON
Last Reply October 28, 2014 at 01:22
Started December 31, 2011
Hello all in the UK from Victoria, Canada

I have had an active group, functioning for the past 4 years. We now have over 130 members. What we all have in common is the condition called "May-Thurner Syndrome," otherwise known as Iliac Vein Compression Syndrome.

Many of us have stents, in fact, most of us have one or more. We include a growing group of members from the UK, therefore if you join my group you can meet others from England-Ireland-Scotland, as well as Sweden, Australia, Hong Kong, and Canada. I'm probably leaving some out.

Write to me at woodcreek12@aol.com for joining information and please mention that you saw my post here when you write.

We are the only such group in existance if you are wondering if there is something similar in the UK. There is nothing like us to my knowledge. We're also on Facebook. Look up "May-Thurner Syndrome Resource Group" on FB and you can join there as well.

With my best regards,
Diane Peterson, Canada

3 replies...

MAY-THURNER SYNDROME SUPPORT GROUP
Posted by Diane
Last Reply October 28, 2014 at 01:05
Started May 11, 2008 at 17:53
I am still welcoming new members to my May-Thurner Syndrome Support Group. I started this group in January 2008 and we now have 26 members. Contact me at woodcreek12@aol.com if you have interest in joining.

This is a closed site, accessible by invitation only to preserve our privacy. Our mission is to offer support to one another and to share whatever information we acquire with regard to advances in MTS treatment.

--Diane

5 replies...

MAY-THURNER SYNDROME
Posted by Diane
Last Reply October 28, 2014 at 01:03
Started November 8, 2007 at 16:09
There are two of us on this forum who have May-Thurner Syndrome in common. Are there any others? It would be interesting for us to start our own discussion group for sharing purposes as this is a relatively rare congenital condition that can go undetected until it suddenly rears its ugly head. Note: May-Thurner Syndrome presents symptoms on the left side so it would be a left leg/abdomen DVT.

29 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...

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...

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...

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?

12 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.

2 replies...

Warfarin Skin Rash
Posted by Fawzia
Last Reply October 21, 2014 at 12:10
Started October 21, 2014 at 12:10
Hi,
Ive been on Warfarin for about 6 months. About 5 months into it Ive developed sparadic skin rashes on my hands and arms. They are about 1/2 inch big.Scratching lightly. Initially, I tought it was masquito bites...but they are not. Anyone else with this problem?
thx.

0 replies...

d dimer positive because of menstruation
Posted by mimms
Last Reply October 21, 2014 at 07:38
Started October 21, 2014 at 07:38
I went for scan at dvt clinic today after a positive d dimer (0.87?)
Nothing found on scan even though leg has been painful for nearly two weeks and is swollen. I also have had a previous dvt in the same leg 5 years ago....
Anyway nothing found on scan so they've put it down to 'muscle pain' (anyone else had this really annoying patronising outcome?!)
When I asked why my d dimer was high they said it was because I wan my period?
I know it can be high in pregnancy so is this really a possibility?


0 replies...

Dvt or phlebitis ??
Posted by Eacokelly
Last Reply October 19, 2014 at 15:03
Started October 19, 2014 at 15:03
I am 36, pregnant and normally only slightly overweight. I have developed
extensive spider veins with underlying varicose veins on about 30% of my right
calf. I also have varicose and spider veins behind my knee and up the back of my
thigh. They have tripled in size and area in the past month. I have on and off
burning and heat in both the spider veins and varicose veins that seems to be
worsened by standing. I was examined by my ob gyn this week who did not seem
concerned. Is this possibly caused by new varicose veins forming or should I see
a vascular doctor to determine an underlying cause?

0 replies...

New clots on warfarin?
Posted by Sarah
Last Reply October 19, 2014 at 02:10
Started October 19, 2014 at 02:10
I was diagnosed with a massive clot in my pelvis down to my calf
in August. Had a catheter directed thrombolysis and the clot grew
back within twelve hours. Was put on Xarelto. Had continuing
problems and then suffered multiple pulmonary embolisms after six
weeks. Was in hospital for ten days and they said Xarelto had
totally failed as a treatment. Went on LMWH for two weeks and
transitioned to warfarin. Found out I have Factor V Leiden and INR
target was raised to 2.5 to 3.0 but still not therapeutic after
three weeks. Now I'm getting blood rushes in my ear, stabbing pain
in my arm and blood gurgling in my arm. Went to ER and they said
even if I have new clots I am anti-coagulated so what can they do?
I'm terrified the warfarin isn't working either, but how can I
tell? Anyone with advice?

0 replies...

DVT pain and depression
Posted by 21yr old girl
Last Reply October 18, 2014 at 22:29
Started May 24, 2012 at 22:25
I had a pain in my calf coming and going for months, but I thought it was
muscle pain as it increased or decreased depending on how I bent/used the leg.
On Christmas day 2011 I was admitted to the hospital after a few days of
agonizing pain coming from somewhere else; my groin on the left.
It was so bad it radiated up and down on the entire left side of my body and I
couldn't move right.
At the hospital I was told that every vein except the main artery was blocked,
and they put me on warfarin. They said it was most likely caused by birth
control, and I'm no longer on it.
Then the usual stuff, stocking, additional tests due to low bloodcount and
anemia etc, and I was out of the hospital in time for New Years Eve.

I was on sick leave for 2 months due to the swelling and pain, and ended up
getting fired because my employer "didn't need me anymore".
I live om my own and pay my own rent, but im now on welfsre.
I kept a brave face but as I got into my third mon... read more

5 replies...

*therapeutic* coumadine levels
Posted by Michelle
Last Reply October 18, 2014 at 21:13
Started September 8, 2006 at 07:05

I'm having a rough go right now getting my coumadin levels right. I've been on it since July 25th 2006 (day ONE!) they want me between 2.5-3.0 and it's not wanting to happen.

I'm now up to 7 1/2 mg one day and 10 mg the next (alternating). My GP seems to be shocked that it's staying only at 2.0 even though they're raising my meds AND I'm not eating ANYTHING green (or other foods w/vit. k)!

What gives? Any thoughts?

30 replies...

Another DVT??
Posted by Meliss
Last Reply October 18, 2014 at 17:20
Started October 18, 2014 at 17:20
I had my first DVT 10 days ago from calf to ankle. They started me on Hepari.
shots and Coumadin . The Coumadin is being monitored and I was at clinic
yesterday INR was 1.9 so I took 7.5mg last night. This morning I wake up with a "
Charlie horse" feeling in my other calf. With my INR over 2.0 probably it is
probably really just a muscle thing right? I have think (hope) my blood is too thin
to form another clot. Question is....should I bother going to ER? I hate the
hospital and this pain is not as bad as the "real" DVT. They probably would not
treat any differently right? Just make me stay in hospital to cover their butts?
Please let me know what you think.

0 replies...

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