DVT deep vein thrombosis forum

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dvt in leg- need advice on next step..
Started by denise
Posted: October 8, 2008 at 16:35
Had a DVT in my leg, left the hopital 10 days, and don't have my first apt my the hemotologist for another week. I have lots of questions, but most importantly I'm wondering if:

-Is a hemotologist the right doctor for this issue?
-And am I better off to get up and move or keep my leg propped up (when I get up my ankle and lower leg seems to swell up).

Tkx, d

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Re: dvt in leg- need advice on next step..
Reply #1 by Justin
Posted: October 9, 2008 at 03:33
Hey, I really wish I had a hemotologist when I was going threw mine. Yes I believe that would be a good doc. Or vascular surgeon. I was told when I was in the hospital to start walking as soon as I could. little at a time. The swelling sure does suck., ask about the compression stocking soon, It helps big time. I hope this message reaches you and your questions get answered, God knows its a tough route and it seems like you may get more info here than from the docs. Good Luck let us know what you here so others that may need help read.
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Re: dvt in leg- need advice on next step..
Reply #2 by D
Posted: October 9, 2008 at 03:54
Hey Justin, tkx for the info. Nobody mentioned anything about stockings at the hospital but it sounds like the proper thing to do. I've been "gently" using my treadmill, but it does cause my calf & ankle to swell & it freaks me out.. I was in the hospital for a week & thought that when I left the problem was all gone.. boy was I wrong.

I see the doc Monday & will most definitely share any valuable info I get with others in need. Tkx again, ;)
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Re: dvt in leg- need advice on next step..
Reply #3 by Sharon
Posted: October 9, 2008 at 06:49
Denis--If the clot is in the thigh, you may want to investigate thrombolysis to clean it out and prevent some of the valve damage and pain. See a vascular surgeon or intervention radiologist for that. The machines used are EKOS or angio-jets. There are risks that they will explain. There are posts on this site that give thorough explanations also. Don't do strneuous exercise for several weeks until the clot stabilizes or you could break it loose and get a pulmonary embolism. Good luck. I pray you find the right doc. Where do you live? You don't want to mess around bcs the older the clot gets the less chance of the procdure working. Not telling you to do it, just that if you want to have a chance at it you have to get on the stick and investigate it quickly or the opportunity is gone or chance of success reduced. Few VS will attempt it after a couple weeks. John in Dallas had it done after 3 months, but his is more the exception than the rule.
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Re: dvt in leg- need advice on next step..
Reply #4 by John in Dallas
Posted: October 9, 2008 at 07:42
Denise, Definitely look at what Sharon said about a vascular surgeon. Go to topics at the top of the page and type in 'John in Dallas' and read my whole story on intervention surgery. Then go to topics again and type in 'Sean Libbert' and read every thread on both Sean Libbert and Mark Hoppe and their experiences. I hope this gives you a lot of information.
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Re: dvt in leg- need advice on next step..
Reply #5 by denise
Posted: October 9, 2008 at 10:32
Sharon -
The pain began on 9/11. I live in SA..After reading your post (& John's posts), I'm going to call a vascular surgeon..I don't have insurance and that's scary, but I don't care, I have this feeling that it's better to be safe than sorry. Thank you!

John -
Tkx. Read the posts you recommended. We share similar experiences.. I'm 40 and active. I woke up on 9-11 with left side lower groin pain with no predisposition to dvt & supposedly in good health.. Needless to say, the pain was increasing so I went to the Tex Med Clinic on 9-12 here in SA. The doctor informed that it was just a "muscle spasm", sent me home with pain killers and told me to go back in 3 weeks if I saw no improvement. (Can you believe I went home and tried to massage out the muscle..Later, ER docs told me that that was the worst thing I could have done.)

Needless to say, by Monday 9-15 my leg began swelling, the pain increased & was now traveling down my inner thigh to my knee & calf & I was still clueless. This left me camped out on the couch in disbelief that a "muscle spasm" could produce such pain & swelling (Obviously & in retrospect his diagnosis was very wrong).

Ultimately, I got to the ER room early on 9-17 & was admitted immediately. Like you, I was given Lovenox & coumadin & was basically informed that I would need to take coumadin for 3-6 months (with no explanation of anything)..

It wasnt until I left the hospital on 9/23 - and gratefully found more information on this forum. Since then, the info found here has prompted a multitude of questions. I feel angry & frustrated that my questions could potentially lead me to making a decision (like you) that will provide me have a better quality of life, but the apparent time-sensitive nature of my issue has somehow been negated by my hematologist - since he is so booked, I can't even get in to see him until 10/13.

I'm sure all of you guys can relate.. I'm going to find a vascular surgeon also.

Thanks for the info! It is so much appreciated.

Frustrated,
d


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Re: dvt in leg- need advice on next step..
Reply #6 by John in Dallas
Posted: October 10, 2008 at 08:04
Hang in there and keep us posted, however, don't wait around on a hematology appt because sometimes it can be a waste of time as in my case and many others. Feel free to contact me at Johnindallas1@gmail.com.
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Re: dvt in leg- need advice on next step..
Reply #7 by Michelle
Posted: October 10, 2008 at 17:30
Wow... it's horrible to have such a scary life-threatening problem and no medical personel to help.
The first thing you want to do is see about thrombolysis. I think you only have a brief period of time you can have it done before the clot is 'set'.
I was put on complete bed rest - but I'd also just gone through having a baby, and was severely anemic. I had a massive clot - groin to ankle. My cousin, a vascular surgeon, said the best thing to do is get up and exercise.
Make sure you get a compression stocking - and have it fitted by a qualified fitter (I have my certification - but many people don't!).
Next - wear the stocking as much as possible. It takes down the swelling, and reduces pain.
Only exercise as much as is bearable. Your body is creating new collateral veins so the blood can flow around the blockage (isn't the human body amazing!). You want to encourage the formation of new veins - hence the exercise - the more your body needs to get blood to an area, the greater the vein formation. On the other hand, don't exercise so much that you're in pain, or causing a lot of swelling.
Make sure you're taking your blood thinner (coumadin or heparin) - and keep your INR up over 2.
Ask your doctor for blood tests to determine the cause of the clot (was it genetic?) Knowing the cause of your clot can help put your mind at ease - or prepare you for a life-time of vigilant monitoring for another clot. At least you'll be prepared.
If you have any other questions, just ask. I got my clot 7 years ago. Still have it, as it was so massive, the doctors were scared to try to break it up or remove it. I still deal with residual pain - but morphine helps a lot with that. The biggest problem I find, besides the pain in the leg, is the many restrictions that being on coumadin causes. A lot of foods are now limited or out-of-bounds (anything with lots of vitamin K). I am not allowed to compete in any contact sports (too high as risk of bleeding). Even things like minor surgery, going to the dentist, getting blood tested, having botox injections for my wrinkles (!) - all an issue because of the coumidin and increased risk of bleeding / bruising. Apparently I won't be allowed to do any sky-diving (not that I ever did before!). The risk of internal bleeding if the landing is hard is just to much of a risk!

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Re: dvt in leg- need advice on next step..
Reply #8 by inbal
Posted: October 12, 2008 at 13:27
Denise,
I had a similar experience...doctors thought it was a muscle issue. Could hardly walk and the 'wait patiently' advise only made the situation worse!
I am so happy to have found this forum and read about others' experiences...I am learning more about DVT each day and hoping to hear about everyone's recovery.
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Re: dvt in leg- need advice on next step..
Reply #9 by Martin
Posted: June 30, 2011 at 10:59
I have two DVTs left leg was a motorbike accident 15yrs ago,and my right leg has a DVT witch broke off causing a pulminary embolism, I am n ow on warfarin permantly that was 4yrs ago. would it be dangerouse to continue aromatherapy full body massages .
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