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 PTS and Venowave
Posted by Martha Moon
Last Reply October 30, 2014 at 21:46
Started August 10, 2011 at 09:20
I developed my first DVT over a year ago. It was incredibly painful I
was taking pain meds around the clock. Finally the pain subsided after
about 6 weeks and a full month off work. I gathered info on the
Venowave. It seemed to get mixed reviews here however I went for it out
of desperation to get back to work. So far I am showing virtually no
signs of PTS which was my greatest concern and the anxiety of developing
another DVT is eased by wearing the Venowave. I know the coast is not
clear for PTS yet, but all looks good this far and I am pleased.

119 replies...

Scared of second clot
Posted by Kaylee
Last Reply October 30, 2014 at 16:52
Started October 29, 2014 at 14:37
Back in April I had 3 small PE's caused by birth control. I was
taking microgestin fe and stupidly skipping the placebo week and
just going to the next pack. I did not have a period for 6
months. I went to the ER with pain in my back when i breathed and
was told it was pleurisy. 3 weeks later i came back because I
coughed up blood. Turns out I had 3 small clots in my lung none
in legs. I was put on xarelto and was tested and was negative for
all of the factors. Now that my 6 months are up my doc has ok'd
me to go off of the meds esp since I am bleeding too much with
menstruation and I am terrified of another clot. What is the
chance of getting another clot if I had no factors and do not take
bc? Will it hurt again if I get another one?

1 replies...

Exercise after massive DVT?
Posted by Jennifer K.
Last Reply October 30, 2014 at 16:12
Started July 3, 2006 at 01:13
I was 35, fit, healthy, never took birth control pills, no serious injuries... and then out of nowhere I had a massive dvt in January 2005 and nearly died. My left leg and left side of abdomen and groin were affected and I am still using a walker (frame) to get around. I'm on Coumadin daily, and also am eating some spinach every day (for me, the vitamin k helps my inr levels to stabilize).
I have gained approx. 100 lbs and am by far the largest I have ever been. My doctors tell me in the same breath that I must lose weight, but to not do anything to elevate my blood pressure (which is low) or my heart rate!
There's a serious risk with having lyposuction, etc, so other than that, how am I supposed to lose weight?! I DO watch what I eat, am careful about what I eat and how much and am eating far less than what I ate when healthy and fit (pre-dvt), but I'm huge. My pharmacist pointed out side effects to Coumadin such as weight gain, insomnia, hair loss, and I have all the side effec... read more

340 replies...

blood donation and INR
Posted by Kathy Gudgel
Last Reply October 30, 2014 at 12:15
Started October 29, 2014 at 17:54
Does donating blood affect one's INR? I donated blood and one week later my INR dropped from 2.7 to 1.7 with no change in my exercise level or diet.

1 replies...

Blood Rush in Ear after DVT?
Posted by Sara
Last Reply October 30, 2014 at 12:08
Started October 29, 2014 at 16:37
Has anyone experienced intermittent blood rushes through the ear
after a DVT? It is driving me crazy. I'll suddenly feel a pulsing,
pounding blood rush in the ear on the same side as the DVT, that
momentarily deafens me and then it disappears.

1 replies...

DVT and mini pill confusion
Posted by Lauz
Last Reply October 30, 2014 at 01:23
Started August 20, 2009 at 12:17
I have a DVT in my right calf, diagnosed 30th July, I am currently on 6mg of Warfarin a day, INR was 2.9 today. I talked to a nurse practitioner about contraceptive alternatives, as I stopped taking my combined pill Yasmin the day I was diagnosed - they believe this is what caused by DVT.

The nurse practitioner suggested the progesterone-only-pill (POP) otherwise known as the mini pill, as I didn't fancy the coil or implant.
I was given 3 months of Ceravette today, I haven't taken any yet but I just read the leaflet and it says inside "Do not take if you have a thrombosis".

Er, alarm bells are ringing! What should I do? Does anyone else on here take this pill with a DVT?

32 replies...

PERIODS ON BLOOD THINNERS
Posted by DANIELLE
Last Reply October 29, 2014 at 13:25
Started February 23, 2011 at 18:05
Can anyone tell me if your periods have been so haevy while on blood thinners. I am going on day 4 and going threw super tampons every 2 hours plus noticing large clots. I know they told me my period would be heaver but my i cant take it!!!!

163 replies...

Protein C deficiency
Posted by Elisabeth
Last Reply October 29, 2014 at 12:40
Started August 28, 2014 at 17:41
Hello,

I had a proximal DVT almost a year ago and I was on warfarin for 6
months. I was taking birth control pill, so I was advised to quit,
which I did. I'm in my late thirties.

I received the results of the genetic blood tests and other tests that
I underwent. Everything was fine, except for the protein C: normal
levels go from 70 to 140 and I have 52 only:(. I have seen three
different haemathologists to know what to do: either start blood
thinners again or hope for the best and go on with my life... Two of
them told me 52 is not that low, and once I've quit the contraceptive
pill I should be fine. But one of them told me I should re-start blood
thinners immediately!She said that protein C deficiency is very
dangerous and that I will have another DVT (or even worse - a PE)
almost for sure! I am so scared now. I can't figure out what to do!

Could you give me your opinion, please? Are there anyone here with
this deficiency? What were you told by yo... read more

4 replies...

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...

tattoo's on warfarin!
Posted by chir jones
Last Reply October 28, 2014 at 06:03
Started June 7, 2008 at 09:29
Morning all,,

Just a wee question for you all.

Has anyone actually been tatto'ed whilst on warfarin therapy?

I was wondering aboutgetting one and wondered what the stats were for post tattoo bleeding etc.

Be safe you lot..

Chris in Bonnie Scotland.

85 replies...

Joint Pain and Warfarin
Posted by Christel
Last Reply October 28, 2014 at 05:01
Started April 13, 2012 at 13:59
Hi, I have been taking Warfarin since December and I have like many tiredness, and often feeling really cold and shivery. I kinda accepted these side effects but I have been recently experiencing a lot of joint pain in knees and legs which has greatly reduced my mobility. (Am also waiting for a knee arthroscopy) I have just had blood tests back and i have been told I have very raised blood levels showing there is a inflammation and I will now have to see a rheumatologist asap. Before the injury i had and DVT last december I was very healthy and always on the move at work, ggoing to the gym sometimes and although not ultra sporty by any means i was fit and active at the least and had no joint issues.
Has anyone else experienced joint pain on Warfarin? Has anyone else had their medication changed from Warfarin as a result of joint inflammation? Would love to hear your experiences if this affected you. I am gathering info on this so that i can go to my doc armed with some potential ev... read more

62 replies...

Gunther Tulip & Pain?
Posted by Jeff
Last Reply October 28, 2014 at 02:31
Started January 31, 2010 at 15:01
Greetings,
and thank you for this forum. I was diagnosed with DVT-PE Dec 21 and received a gunther tulip on Dec 22 in my groin area. The pain from the blood clots has slowly gone away but I got severe pain in my back/hip directly behind the filter. Has anyone experienced any pain with the filter? I also have shooting pain through my groin and down the front of my thigh. I couldn't even walk for a week, went to the dr - he checked for bleeding and said there wasn't any. Still tremendous pain so I went to a Chiropracter, he seemed to help me some howerever wasn't happy about working on me. The pain remains but not as stabbing and I can get around. I feel funny in my groin area and back/hip. Any info from someone with a filter would be greatly appreciated. We have searched the net to no avail and found no helpful information.

4 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...

xarelto and hair loss
Posted by Jessie
Last Reply October 28, 2014 at 01:20
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.

4 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...

DVT & May-Thurner Syndrome
Posted by Donna
Last Reply October 28, 2014 at 01:01
Started January 15, 2007 at 21:38
Has anyone who has experienced a DVT been diagnosed with May-Thurner Syndrome? If so, did you have a stent or stents put in your Iliac vein?

135 replies...

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