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 (4694) - Page 2 of 235
Iliac vein stents
Posted by Rachel
Last Reply July 10, 2017 at 14:27
Started June 30, 2009 at 18:02
Okay I am a 14 year old female and I have May Thurner Syndrome and I have a vascular surgeon Dr.Franz he is awesome! Well I have had 2 angioplastys and he is was not planning on putting a stent in until I was about 23 and stopped growing.Well he found a stenosis that might be growing and getting progressively worst.So he said that he will be putting the stent in in august after I go back for my regular 3 month appointment and testing as usual I will have a venous duplex(ultra sound)and an mrv.I currently have a dvt and have been on coumadin for 7 months when I go back to him in august I will come off the coumadin yay! I am worried about having the stent placed because I might grow and then I don't know what will hapopen and he said that once the stent is in there he can't move it. So yeah I am kind of scared.How was your or is your experience with the stent?!?


31 replies...

Subacute DVT advice
Posted by bog
Last Reply July 8, 2017 at 14:57
Started July 8, 2017 at 14:57
Hi I was diagnosed with a subacute DVT in the peroneal vein (calf) 2 days ago.
They sent me home with a Xarelto prescription and told me to put on
compression socks. However, I am in so much pain I can't even elevate the leg
properly because the pillows put pressure on the calf, much less get the socks
on.
Currently taking an acetaminofen/codeine (325mg/30mg) combo tablet every
4h and as long as I don't move, I'm fine. But if I dare to get out of bed the pain
is unbearable even with the pain meds. Any advice on pain management or
sleeping positions would be appreciated. Preferably nothing too strenuous on
the hip since I had hip surgery a few weeks ago.

0 replies...

Clexane 40 mg long term??
Posted by Jonathan C
Last Reply July 8, 2017
Started July 8, 2017
Hello everyone,

I am nearing my one year anniversary since i had bilateral PEs i am 32 year old
male and after extensive blood testing doctors could not find the cause. I have 3
kids that i would love to see them grow old.. in the hospital i was put on clexane
60 mg for 3 days then started on xarelto.. after 6 days had trouble moving my legs
which doctor said was a very very rare side effect.. so i was put on clexane 60 mg
every 12 hours.. im nearing my year after my PE and doc said 40 mg clexane once
a day for prevention.. could be indefinite .. has anyone been in this situation?? is
Arixtra better than clexane?

TY !!1

Jon

0 replies...

xarelto and hair loss
Posted by Jessie
Last Reply July 7, 2017 at 14:42
Started October 17, 2014 at 05:08
I suffered bilateral pe's shortly after
the induction of anesthesia for a gall
bladder surgery. I was started on
coumadin in the hospital. The drs wanted
to switch me to Xarelto, selling it as a
wonder drug.

Since taking it, I've experienced terrible
hair loss. (I was at work the other day,
took out my pony tail and ran my fingers
through my hair. I threw away the
resulting clump. My friend came over to
talk, saw the hair and wanted to know why
I cut my hair at work).

Has anyone else had this issue? After a
discussion with my drs, we're switching
blood thinners. I hope the hair loss
improves.

35 replies...

foods to avoid
Posted by laura vincent
Last Reply July 6, 2017 at 02:19
Started November 8, 2006 at 19:44
My brother has dvt in right calf. They can't seem to get his levels to anything higher than 1.9. He's been in the hospital for 15 days (46 yrs. old - healthy, dvt caused by trauma - he fell of his bike and bumped his leg). Part of diet in the hospital includes fruit. Should he be avoiding fruit? He said he has been told to avoid green leafy vegetables but that's all. Any info would be appreciated.
Thanks so much.

67 replies...

Weight gain on Warfarin
Posted by Teresa Blackman
Last Reply July 5, 2017 at 07:00
Started January 14, 2007 at 17:12
Hi All'
My husband was diagnosed with a DVT in August. He is taking warfarin, however he has found that he has gained a stone and a half in weight. Has anyone else experienced this?

94 replies...

Anyone else taking Xarelto?
Posted by Ken
Last Reply July 5, 2017 at 06:53
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

269 replies...

INR + Alcohol
Posted by Michelle
Last Reply July 5, 2017 at 03:48
Started July 4, 2009 at 08:46
Hey there--

Let me put it out there that I am not a big drinker, usually when I drink, it's socially, and maybe have a couple of glasses of wine a month...but it's sporadic...and not at all consistent which is what seems to be necessary to maintain a stable INR.

I am down to getting blood draws every 2 weeks and don't have my next draw until July 13th. Last time I went it was low at 1.7 (June 18)

I was told to limit my alcohol consumption to 1-2 glasses a night...I feel like that's a lot!

Anyways, tonight I had about three glasses of wine, not MONDO sized but still, three.

It was probably a poor decision, and now I am nervous about it!!

I just an not really sure yet how quickly things can affect Coumadin. My dose just got up'ed, and I accidentally switched a full dose day with a half dose, which means I've taken 3 full doses (5 mg each) in hour days. (It used to be that I only took this full doses on Monday and Friday)

Anyways. Kind of nervous about it.

I ... read more

12 replies...

Working with a DVT.
Posted by Kerry Bradley
Last Reply July 4, 2017 at 04:49
Started July 4, 2017 at 04:49
I am a nurse and have just been diagnosed with an unprovoked DVT, in my left
leg.
Can I work while I've got it? My manager has said "so you can't work with it
then?" I'm not good with things like this, so I don't know!
It's very sore at present, as I've only been diagnosed 3 days.
Any help would be very gratefully received!
Thank you.x

0 replies...

Stent in Iliac Vein
Posted by Diane
Last Reply July 3, 2017 at 15:54
Started October 24, 2007 at 05:26
Has anyone had a venous stent inserted into their Iliac vein following a DVT. This was done to keep the vein open and relieve pressure on it from an adjoining artery. My question is for those who have a Wallstent. Do you still have pain in that stented vein? I continue to have pain three years after the DVT.

24 replies...

XARELTO
Posted by Zeb
Last Reply July 3, 2017 at 12:38
Started October 2, 2012 at 04:29
Folks Xarelto is so much better than Warfrin! Less side effects no INR checks ever! It has been shown to be more effective at preventing specifically DVT's than Warfrin or Lovenox. It is approved in Canada all of Europe and most of Asia for DVT prevention. I hated Warfrin so bad I convinced my doctor to put me on Xarelto. Best decision ever. Ask/beg your doctor for Xarelto you will be happy you did!

55 replies...

when to go back to work with a PE?
Posted by peter
Last Reply July 3, 2017 at 05:39
Started September 24, 2008 at 18:06
Hi everyone, I work in the freight business … in the month of august I ve had an accident that occurred while I was unloading trailer’s , something came down on the back of my left knee and , in the meantime I was not doing bad , kept working I just had a few scratches nothing to be alarmed at, but after about a couple of weeks all of a sudden I ran out of breath… in the first place I thought it was a panick attack or something else like high cholesterol so I decided to check with my family doctor , I was told to go at the hospital immediately , get some blood tests, they made me do a Doppler for my leg and found out that I had a blood clot in the back of my knee and sinceI was having shortness of breath a ct scan was done to see if it had moved to the lungs.. the ct scan did reveal that I have several clots in my lungs…I got treated with 2 shots a day and 1 5mg coumadin pill …for a few days then after 6 days they stopped the shots and I resumed with 8mg for 2 days (inr 1,5) , n... read more

10 replies...

flying while still having dvt
Posted by magnet
Last Reply July 3, 2017 at 03:44
Started September 5, 2007 at 07:52
i am due to go on holiday in two weeks.the flight is for two and half hours.Has anyone else flown while still having dvt.i know that i will have to use socks and move my leg around but has any one else got any other advice.
i have the dvt in my left low leg.
i am 32 years old

56 replies...

No IVC
Posted by Jan
Last Reply June 30, 2017 at 02:52
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.

9 replies...

DVT/Bilateral PE /Lyme Disease
Posted by Greg66
Last Reply June 28, 2017 at 20:56
Started February 8, 2008 at 05:30
Hi All,
I think I have read all the posts in this forum. All the stories have been very helpful and informative.


Pomfret, Connecticut USA:
I was diagnosed with extensive DVT in my left leg, from the groin down the femoral artery into the calf on 1/12/08. On 1/13/08 I was diagnosed with bilateral PE/3 PEs, and I had no symptoms other than an elevated pulse of 110 b/min. I was being treated for Lyme Disease since 9/08. I first noticed soreness in both of my calves on 12/5/08, which persisted with the left calf worse than the right. On 1/10/08 I had some soreness on the inside of my left knee. The whole time I had these symptoms I thought they were part of the muscle/joint pain/soreness associated with Lyme Disease. My wife was rubbing my calves for a month, not a good thing in retrospect... On 1/12/08 my left calf was slightly red and warm to the touch/soreness behind and on the right inside of my left knee. I actually took a hot bath and rubbed my leg in the bath, the... read more

28 replies...

DVT in left arm from IV
Posted by Christina
Last Reply June 28, 2017 at 18:48
Started August 28, 2008 at 21:20
Hi,

I am so happy to have found this site. I've been sitting in a daze for 5 days now just dumbfounded by what has been going on with me. I just need to talk to other people about this that understand and can give their perspective.

Last Wed. I underwent emergency surgery. I had IVs in my left arm - many of them. I was released on Thursday, but by Sunday I went back to ER with complaints about how bad my arm hurt. The ER doc had ultrasound tests done and showed superficial phlebitis (sp). I was told to put arm up, with heat and take ibuprophen and to see outpatient vascular dr. in two days to make sure clot has not moved.

I went to the dr. on Tuesday and the technician said the clot hadn't moved and that it was in a superficial vein. He said he wanted me to the see dr. on Thursday.

I came back in today and met with the Dr. He said that I need to take aspirin and that the clot is more Deep Vein than Superficial. I'm so perplexed!!!! First they all say superficial and now... read more

14 replies...

Warfarin and periods
Posted by Anne
Last Reply June 28, 2017 at 15:09
Started October 10, 2009 at 10:06
I stopped taking warfarin the 25th of september. Was supposed to get my period the 7th of october, but so far nothing and its normally very regular.
Anyone has similar experience after stopping with warfarin?
(2 negative pregnancy tests)

25 replies...

Stents in the Iliac Vein and exercise
Posted by Donna
Last Reply June 28, 2017
Started April 20, 2008
Hello,
Are there any restrictions to do strenuous exercises if you have stents in your Iliac Vein (Abdomen)?

14 replies...

Pulmonary embolism survival rates thes days!
Posted by Ali
Last Reply June 28, 2017
Started December 22, 2008 at 16:08
I wasn't sure how to title this but wanted to say that I lost my mum 32 years ago, (who I never ever remember her having any illnesses whatsoever) after she took ill with leg pain one day, she phoned the doctor who sent her to hospital and 36 hours later she very sadly passed away as the clot had moved to her lung.

What has changed from then until now regarding the treatment of a blood clot? My mother had never been ill in her life but suffered with varicose veins so presumabaly the blood clot stemmed from that!

I have read so many posts on here where people have DVT, clots etc and receive treatment and survive what would have killed someone 30+ years ago but I suppose it's like everything, medical research just progresses all the time.

I would be interested in hearing what anyone has to say and if they know people who died several years ago and who would probably easily survive these days!

Thanks Ali



67 replies...

Xarelto and nightmares
Posted by Jane C
Last Reply June 26, 2017 at 09:43
Started January 4, 2014 at 16:36
I have been on Xarelto for 3 months and every time I wake up in a panic after a terrible
dream. The nightmares started the night I started taken the tablet (day 3 in hospital) and
have happened every day since. I am not on any other medication and when I mentioned it
to my Dr said it's not listed on the "side effect list." Has anyone else had side effect?

21 replies...

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