Life DOES go on after DVT
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 Travellers Thrombosis

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Pimentel




Posts : 5
Join date : 2009-07-19

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PostSubject: Travellers Thrombosis   Travellers Thrombosis Icon_minitimeMon Jul 20, 2009 6:46 pm

Hello all

I am Pedro and I am Portuguese. I have recently turned 29. I always had a very active life, never drink or smoke, and try to eat healthy. I consider myself a sportsman and, in fact, In the last 5 years I don't remember ever getting sick... Until now.

I got my DVT during a 4h flight. When I got up after the flight I felt a slight pain on the back of the knee (popliteal vein). I was not correcly diagnosed until the 4th time I went to the hospital and after a lot of complaints. The 1st time was 3 days after the incident. The 4th time... 3 weeks after. At that time the swelling was nasty and I could hardly walk. Certainly the clot became much worse during that time, and when I finally got my Eco-Doppler, the obstruction of the Popliteal vein was total. I was told to take Heparin shots (Fragmin 15.000 UI/0,6ml) every day for the next 3 months, and for the next 2 weeks try to move only to go to the bathroom. I should wear, as well, compression socks during the whole period. I also started to take Daflon 500 (http://www.daflon.com/Pro/Venous/Daflon/Daflon.aspx?id=656), which I still take right now.

I did exacly how I was told and I felt the swelling decrease significantly during the first week. After that I started to move a little more, taking small walks, got back to work and feeling a little better. When I got back to work, though, I started to feel worse again because I have a desk job and being sitting or standing for hours causes accumulation. After work I had to lie down for an hour or so to get some relief.

After the 3 months, my doctor told me the Heparin was no longer necessary and I could slowly do sports again. I should keep the compression socks and Daflon 500. I asked for another Eco-Doppler and the doctor told me that it wasn't necessary once It wouldn't change the therapy, only would satisfy my curiosity. And it wouldn't be definitive once I was still recovering. He scheduled one for a year after the incident (next february) in which we would find out the permanent damages I would have to live with for the rest of my life. He said that eventually the clot will disappear entirely or almost entirey. The biggest danger is the damage that may have been done to the valves in the vein. He said that there is no recovery whatsoever from a damaged valve (I guess it's the same as Post Thrombotic Syndrome).

The doctor told me all this without doing any tests at all, besides looking at my leg. I requested a tromphilya test and I am still waiting for the results on that.

I decided to get back to sports right away and, at the beginning, I felt a lot of muscular pain, due to the atrophy in the left leg. A couple of weeks after, though, I started to feel better and now I can do more sports, though I still get the leg a little swolen. I do basically mountain bike (huge fan), swimming, and lately some leg weight lifting in the gym. I think that sports where you get low impact and high leg movement (like swimming and cycling) are much better than walking or running. At least I have no problems with the former and a lot with the latter. I've been doing some kind of leg sports every day for the last 3 weeks and I plan to keep going.

I have a couple of questions to all.

1 - It's better to do as much sports as I can and causing the leg to swell than to sit on my ass with legs extended and making no pressure on them, right?

2 - Is there anything else I can do to improve my recovery? All tips are welcome.

3 - About recovery time: Until how many months after the DVT can you expect to recover? I head that after 6 months you can't expect to see much improvement (and that scares me a lot because I am reaching that phase). Others say that until one year... I know that this varies from case to case. Maybe you can give your personal experience if you have passed that.

4 - Surgery: I head about a surgery called "Thrombectomy" which removes the clots entirely. This seems to be a controversial technique because it is associated with the formation of new clots. What do you know about this?

5 - Massages and Presotherapy: "Specialists" say that these techniques are not recommended for DVT patients because they can dislodge the clots. Is this right?

Thank you very much for your attention.
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brendablackburn

brendablackburn


Posts : 150
Join date : 2008-06-24
Age : 56
Location : Vancouver, BC, Canada

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PostSubject: Re: Travellers Thrombosis   Travellers Thrombosis Icon_minitimeTue Jul 21, 2009 2:22 pm

Hi Pedro,

Sorry to hear about your DVT, but glad you found us... welcome! I'll try to help with the questions the best I can, but remember, I'm no doctor, so can't give medical advice, just my own opinion based on my own experience with DVT/PE. Smile

1 - It's better to do as much sports as I can and causing the leg to swell than to sit on my ass with legs extended and making no pressure on them, right? Well, it's been 3 months? I would think with pushing yourself with sports, you have to be careful...especially if it's causing swelling. Take it easy. The doctor at the hospital said to listen to my body, and stop if it hurts. (I was lucky and didn't have swelling.) The best exercise is walking, which is GREAT to help with circulation. I walked with compression stocking for months, until the pain fully subsided. Swimming can be great too. Dero (who started this forum) will probably be popping in any time, and he can give you his opinion of biking, since he used to do a TON of it. It's important to keep circulation going, but you don't want to overdo and cause another DVT! Also, I guess it depends on the medication you're taking...I'm not familiar with Daflon (maybe Dero is?), as I'm on Warfarin.... still on it over a year later, due to the DVT in my leg breaking off and causing a pulmonary embolism.

2 - Is there anything else I can do to improve my recovery? All tips are welcome. Again, I can just use my own example, but I walked... taking it slow for quite awhile, keeping well hydrated with water, keeping a regular diet, using medical (prescription) compression stockings (especially when walking, flying, driving), leg exercises to promote circulation (like pumping a gas pedal). I also avoided hot baths and hot tubs, which can inflame it. When sitting, I pump my leg from my ankle, elevate the leg, etc. Elevation also helps reduce the swelling, as does compressions socks.

3 - About recovery time: Until how many months after the DVT can you expect to recover? I head that after 6 months you can't expect to see much improvement (and that scares me a lot because I am reaching that phase). Others say that until one year... I know that this varies from case to case. Maybe you can give your personal experience if you have passed that. Gosh, I'd have to go back to my journal here in the forum (DVT Diary Vancouver) to check, but think things were pretty good after 6 months. But, that being said, it's been 13 months for me and I still feel the odd twinge there. Nothing major though, and I feel VERY lucky!

4 - Surgery: I head about a surgery called "Thrombectomy" which removes the clots entirely. This seems to be a controversial technique because it is associated with the formation of new clots. What do you know about this? There are lots of places on the internet that discuss this. I believe (don't know for sure) that this is used when it is very extensive, causing major problems with day-to-day life, etc. It is invasive, so I would seriously have several opinions before venturing that root. Others here on the forum may be able to give opinion.

5 - Massages and Presotherapy: "Specialists" say that these techniques are not recommended for DVT patients because they can dislodge the clots. Is this right? I believe so. I went to massage a week prior to having DVT (before any symptoms) and the hospital said it was a huge no-no, since it could dislodge clots. Again, it may depend on the condition of your DVT at the current moment, your medication, etc. but I personally would stay away from it until your leg is better.

Hope this helps a little! I'm sure others will be here in short order to help also!

In the meantime, I have a live DVT Support Group (in Vancouver), but have a huge lists of resource links, which will better help answer your questions: http://www.meetup.com/DVT-Support-Group-of-the-Lower-Mainland/pages/RESOURCES_TO_RECOMMEND/

Also, if you're on Twitter, I just started a DVT Group there you can follow: www.twitter.com/DVTSupportGroup

Take care Pedro and talk to you soon,
Brenda
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http://www.meetup.com/DVT-Support-Group-of-the-Lower-Mainland/
Pimentel




Posts : 5
Join date : 2009-07-19

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PostSubject: Re: Travellers Thrombosis   Travellers Thrombosis Icon_minitimeTue Jul 21, 2009 5:18 pm

Hello Brenda

Thank you very much for your input and your links. It will take me a while to check it all out, though...

A question to all about anti coagulation: My doctor told me that after 3 months I could stop taking anti coagulants but he did no test to verify this. He said that only after a second DVT or there are clear risks (obesity, smoking, aging, family history, surgery...) people should keep taking anti-coagulants after 3 months. I see Brenda and others still are on anti coagulants (Warfarin) though they seem to be much better and they only had one DVT. What is the rule you are following? Should I keep taking anti-coagulants?

A couple of remarks:

Question 1: At the point where I am now, doing sports doesn't hurt my leg though it does swell a little bit. I guess it's normal. If I notice it gets worse I'll stop right away.

Question 2: I do use compression socks when I am working (I have a desk job). I use them for 10h a day +/-.

Question 3: My DVT incident was 5 months ago. Gosh! It seems like forever... The question was If I can expect to see further recovery in the following months. The fear of staying like this for life scares me a lot (though I can see here that some got it much worse).

Thank you all for your attention.
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brendablackburn

brendablackburn


Posts : 150
Join date : 2008-06-24
Age : 56
Location : Vancouver, BC, Canada

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PostSubject: Re: Travellers Thrombosis   Travellers Thrombosis Icon_minitimeTue Jul 21, 2009 5:44 pm

Hi Pedro,

I know... lots of links hey?! If you want a hard copy list, just let me know your email and I can attach a word document, so you don't have to keep going in and out of the site. (If it's easier.) Smile

Well, sounds like some great things for your recovery... i.e. the exercise/mobility, compression socks, etc. That all makes a difference!! cheers

My doctor first recommended that I take anti-coagulants for 6 months, which he told me was fairly standard. It wasn't until I had the small pulmonary embolism, that he decided I had better stay on it for a year. We have to still discuss, again, when I will get off of them. Since you're already at the 5 month mark, it would be best to check with an MD to see what they think. What do the Dafflon do? What are they for? Also, I've heard some doctors recommend baby aspirin daily from that point on, or another similar thing (sorry, can't remember at the moment... starts with a "p"...maybe Dero will know what I'm talking about.

For me, we believe my DVT came from estrogen (birth control pills), age (being 41), and smoking. (Yeah... I know... not too smart!) So, after stopping these things, the risk of another DVT is lower, but not eliminated.

Also, my Dad, who had heart disease (died this year at age 79), had both arterial and venous clots. The likelihood that I have any genetic predispositioning(?) is small, since his were probably due to his heart disease, but I don't want to take any chances. So after I stop Warfarin for awhile (will talk to a specialist to determine for how long), then I will get the hereditary testing (i.e. for Factor V Leiden, etc.) to rule it out completely. I feel it's better to be safe than sorry! A word of caution if you ever consider this though.... my GP doctor said I could get this testing now, while on Warfarin. However, with the knowledge I have gained since getting DVT, I know this would not be accurate. So I have to be very assertive with having it done "right". If I'm at a higher risk for DVT and have to stay on Warfarin forever to stay safe, I have no problems with it! I never want another DVT or PE!

Also, once you've had DVT, this puts you in a higher risk factor for future ones, as a DVT history becomes a risk factor in itself. Therefore, for the rest of your life, anytime you see a doctor for injuries, surgeries, etc., etc.... anything really... you MUST let them know you've had a history of it, so they can alter your care accordingly. This isn't to freak you out! You might never have another one, but it's always best to be safe right?!

Hopefully others answer here on recovery times, but I would think if you're still having lots of pain, etc. you may want to try to see a specialist (i.e. a vascular surgeon, thrombosis specialist, etc.) For myself, my recovery is pretty much total. I almost never feel it and have no problems whatsoever. However, I may have an upcoming surgical procedure... maybe, have to see.... and in that event I'll have to do special things to prevent a clot. Shocked

Take care,
Brenda flower
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Pimentel




Posts : 5
Join date : 2009-07-19

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PostSubject: Re: Travellers Thrombosis   Travellers Thrombosis Icon_minitimeWed Jul 22, 2009 5:29 pm

Hello Brenda

Thanks again for your input.

About Daflon 500 I can only say I was told to take it by a Vascular Cirurgeon. He said that it wasn't a "must have", it was more of a "could help".

For details I'll send your their homepage: http://www.servier.com/pro/venous/daflon/daflon.aspx?id=658

I'm on it for 3 months now and I can't say it made a difference... or not. Since the evolution of DVTs is so slow, it's hard to notice any real difference or if it came from taking this or that.

Another thing I've tried was Antistax: http://www.antistax.com/en/en/index.htm This I found at the pharmacy (no prescription needed). I commented it to the Vascular Surgeon and he said it was ok to take it. Can say the same I said about Daflon 500.

You may be starting to think I'm some kind of sales agent or something!! I swear I have no Commercial interest in any of this whasoever!! Very Happy

Good luck with your procedure. Hope it all goes well.

Regards
Pedro
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Pimentel




Posts : 5
Join date : 2009-07-19

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PostSubject: Re: Travellers Thrombosis   Travellers Thrombosis Icon_minitimeWed Oct 14, 2009 9:45 am

Hello all

It's now been 8 months since my thrombosis. I've just had an ultrasound and it seems that the thrombus is pretty much as it was from the beginning... No changes at all. No circulation whatsoever in the popliteal vein... Does this mean that it has gone chronic?? As it will be there forever??

I also received my blood tests and they all turned negative. No particular tendency for clots has been found. I don't know if I should be glad because they didn't find anything or worried because they could explain why it happened...

On top of all these great news, two weeks ago I got fired... I was working at a very competitive fashion company that requires a lot of dedication. They said "I wasn't the same after the thrombosis". I was worried about my leg all the time, with some degree of pain and decided to stop with overtime to do some workout to fix my leg. To hell with them. Health comes first.

The good news is that in the last 3 months I've been working out real hard and I am feeling better. Two weeks ago I did 200kms on mountain bike with no problems. I've just restarted running and I feel good. I feel in good shape and the leg can cope with the efforts. I only feel worse when I am sitting or standing for long periods. Does this mean that my body has been able to recanalize blood flow and the thrombus isn't such a big deal after all?

What can I do to keep improving? I'm thinking of raising even more my workout and focus on running (which seems to be the most demanding sport for my leg). Maybe I'll try to do a marathon or something. I just need to feel that somehow I can work my way out of this mess instead of waiting for things to get better.

Regards
Pedro
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