Chronic DVT and Post-Thrombotic Syndrome (PTS)

[roberta]

Four tears ago I suffered a Deep Venous Thrombosis in my left lower leg. I was diagnosed by ultrasound, and treated initially with low-molecular-weight Heparin, and then Warfarin for 3 months. I wore a compression stocking during this period, and took NSAIDs to alleviate the pain. After less than 3 months the pain was gone and I could resume normal activities. There was no follow-up under the British health system, no ultrasound re-evaluation, nothing. I was thankful to be OK, and just got on with my life.

About 2 years ago I started to suffer edema in the left ankle and foot. It was intermittent, and often went away in cool weather. It was only uncomforatble after I had been standing or sitting for long hours. I wore flight socks sometimes to help with this.

Now, I have severe edema, changes in skin color, pain at the ankle, and the whole left lower leg is hot to the touch. I have been trudging around the Bangkok hospitals trying to get help, and at BNH finally had an ultrasound which revealed the source of the problem. The blood clot is still there, and blocking the venous flow. There has been only partial re-canalization. I have had one vascular surgeon after another refer me onward to yet another, and all say the same thing; they cannot operate, and quote the "standard of care", which is the near-useless compression stockings and Warfarin. I cannot work, as the condition is patent, and I have to pass rigorous health checks every year to renew my Norwegian Maritime medical certificate. No work means no income, so I do not know how I will survive in the future. The prognosis is for eventual ulceration, gangrene, and possibly amputation. A bleak prospect indeed.

However, experimental work in the USA has started to show potential for changing the standard of care. Interventional Radiology and catheter-directed thrombolysis seem to be the new buzz-words, and there are reports of some very positive outcomes (see, for example, http://www.vasculardiseasemanagement.com/content/current-therapy-chronic-dvt-interview-mark-j-garcia-md). I have tried to talk about these developments to vascular surgical specialists here in Bangkok, but they do not seem to be even interested, and just want me to go away and stop bothering them - after paying the bill for talking to them, of course!

I am considering risking a large part of my life-savings on a trip to the USA to seek help there, if I cannot get the help I need in Thailand, or another country in this part of the world and where medical costs are less astrnomical than they are in the USA. I should mention that I have no health insurance of any kind, and even if I did I doubt it would pay for what may be regarded as radical experimental surgery. Any suggestions would be more than welcome.

[David48]

WOW ... an interesting read.

I also have had a DVT, lower leg.

Tell me, did you continue the Warfin treatment?

What was your average 'INR'

Hope things work out for you.

[Lefty]

Had 2 DVT episodes 8 and 10 years ago both treated at Bumrungrad first one migrated to lung second to abdomen, in hospital about 10 days for each.Since then have been on warfarin 3mg/daily.No further episodes.INR steady at around 2.50

In November 2013 needed to do a leg bypass as leg artery pluged up-both legs no pluse in either leg. Did the right leg last November at Methodist Willowbrook hospital in Houston. 4 days in hospital and about a month for total recovery at daughters home.Will be doing the left leg this comming October..Cost was fully covered by Medicare plus Medigap policy.These operations will cure my intermittent claudication whereby I will be able to walk more than 75 meters without having leg pain. Excellent doctor.

Lefty

[roberta]

WOW ... an interesting read.

I also have had a DVT, lower leg.

Tell me, did you continue the Warfin treatment?

What was your average 'INR'

Hope things work out for you.

I took Warfarin only for the 3 months for which I was advised to take it. After that I had no symptoms and it was not prescribed again. I don't remember what the INR was, but it was within the range targeted. My undertanding is that Warfarin makes further clots less likely, but has no effect on clots which have already formed. It is a prophylactic against recurrence, rather than a treatment for an existing thrombosis. I have had no further thromboses during the 4 years following this incident.

I believe about 30% of thromboses become chronic, and cause development of PTS. I guess I was just lucky

[roberta]

Had 2 DVT episodes 8 and 10 years ago both treated at Bumrungrad first one migrated to lung second to abdomen, in hospital about 10 days for each.Since then have been on warfarin 3mg/daily.No further episodes.INR steady at around 2.50

In November 2013 needed to do a leg bypass as leg artery pluged up-both legs no pluse in either leg. Did the right leg last November at Methodist Willowbrook hospital in Houston. 4 days in hospital and about a month for total recovery at daughters home.Will be doing the left leg this comming October..Cost was fully covered by Medicare plus Medigap policy.These operations will cure my intermittent claudication whereby I will be able to walk more than 75 meters without having leg pain. Excellent doctor.

Lefty

You had venous thrombosis, you say, but the operations your describe are for blocked arteries. As I inderstand it, clots in the arteries can be surgically removed, but every doctor I have talked to has been insistent that such operations on veins are impossible. I was hoping when I first read your post that I was reading about successful unblocking of a vein, but on more careful study that see that is not the case. Anyway, I don't have any insurance, and the hospital stays you mention would ruin me.

[Sheryl]

Treatment in the US would cost more than you can begin to imagine.

I know that there has been work done on this in China (see http://www.annalsofvascularsurgery.com/article/S0890-5096%2814%2900220-9/abstract) and also Japan - sometimes using stents.

I would expect there would also be something available in Singapore. Suggest yo ucontact the National University Hospital of Singapore

[email protected]

and ask if there are any vascular surgeons there with experience in "endovascular therapy for post-thrombobotic syndrome"

[Langsuan Man]

I just can't believe that you are not on a daily regimen of Wafarin

I had a minor DVT on my lower leg and my Thai doctor, confirmed by my US doctor, put me on daily dose of Wafarin over three years ago. I have my own INR testing machine and I test myself every two weeks. When I asked my US Hematologist when I could get off the wafarin she replied never

When having an ultrasound done for another reason I asked the technician to check my leg and he stated that there was no evidence of the clot but even he said that the best way to insure that it never comes back is to stay on the wafarin

[David48]

In Australia we do switch from Warfin over to a low dose 80mg from memory, Aspirin.

[Langsuan Man]

In Australia we do switch from Warfin over to a low dose 80mg from memory, Aspirin.

Some people are allergic to aspirin and low dose aspirin ( sometimes referred to as children's aspirin) has been a prophylactic for heart disease for a long time now

Edited May 17, 2014 by Langsuan Man

[roberta]

Sheryl, many thanks for your response. I will email that hospital, wait 48 hours, then call. I have emailed many hospitals and individual doctors during my search for help, but none has replied. In some cases the email addresses on websites are even invalid and result in only a bounce message.

I have lived in the US and do have some idea of medical costs there. Without insurance having treatment there would be a fast route to bankruptcy. But if I had no choice I would go there anyway, as loss of a limb is worse than loss of any amount of money.

As for Warfarin, I was on it for 3 months and then was told I could stop taking it. With hindsight I think that must have been quite risky as there was no follow-up ultrasound to check that the clot had cleared; and as I know now it was still there then , and is now. But Warfarin can lead to internal bleeding and makes all trauma dangerous. It nearly killed my mother from internal hemorrhage when they put her on too high a dose after an arterial clot and then failed to monitor the INR level at all. It did me no good when I went on it recently for a while. The clot was not affected. For prophylactic I think maybe I should start taking 80 mg daily of aspirin again. It never did me any harm.

[Lefty]

Had 2 DVT episodes 8 and 10 years ago both treated at Bumrungrad first one migrated to lung second to abdomen, in hospital about 10 days for each.Since then have been on warfarin 3mg/daily.No further episodes.INR steady at around 2.50

In November 2013 needed to do a leg bypass as leg artery pluged up-both legs no pluse in either leg. Did the right leg last November at Methodist Willowbrook hospital in Houston. 4 days in hospital and about a month for total recovery at daughters home.Will be doing the left leg this comming October..Cost was fully covered by Medicare plus Medigap policy.These operations will cure my intermittent claudication whereby I will be able to walk more than 75 meters without having leg pain. Excellent doctor.

Lefty

You had venous thrombosis, you say, but the operations your describe are for blocked arteries. As I inderstand it, clots in the arteries can be surgically removed, but every doctor I have talked to has been insistent that such operations on veins are impossible. I was hoping when I first read your post that I was reading about successful unblocking of a vein, but on more careful study that see that is not the case. Anyway, I don't have any insurance, and the hospital stays you mention would ruin me.

A leg vain was harvested and used to attach to artery bypassing the pluged portion.

You might do some research on India medical issues.Seems half the docors in the U.S. are Indian doctors.Medical costs in India much cheaper than Thailand.

Good luck in your research.

Lefty.

[Langsuan Man]

See a hematologist right away. Your concerns about wafarin may be valid but you have to be on it for more than 3 months or ("for a while") for it to thin your blood enough so that the clot will be absorbed by your body.

You must have your INR checked regularly to insure that your dosage is correct so it will not cause internal bleeding . Once you level out it can be a twice monthly check for less than 200 THB at most labs here in Thailand

What you don't seem to understand is that this leg clot can break off and if it hits your lung or brain you are dead, no internal bleeding required and that is the trauma you should be worried about, not what wafarin might cause

The use of low dose aspirin is an adjunct to wafarin treatment, not a substitute

Edited May 18, 2014 by Langsuan Man

[roberta]

Sorry, but that seems to be a widely held misconception. Warfarin is an anticoagulant. It mitigates against the formation of new clots. It is not a solvent, nor does it "thin the blood". It has no effect on the viscosity of the blood, and does not promote lysis of an existing clot. I discovered this during my research after a doctor here put me on Warfarin again to try to dissolve the now 4-year-old clot. It was futile. I think he did it just so he could be seen to be trying something and charge me a lot of money for it. The depth of ignorance in the medical profession continues to astonish me. The doctor who prescribed Warfarin for me did not even mention having my INR tested frequently to establish an optimal dosage. I had to point out to him that was necessary. As I have said, such malpractice almost killed my mother, so I was not so ignorant as most doctors seem to be.

My experience in the UK four years ago was similar. My INR was too low, so they increased the dosage of Warfarin. On the next test, my INR had nearly doubled, and was within the desired range. She said something like "OK, that's fine then. Stay on that dose for the rest of the 3-month course". I had to point out that if I did that my INR would continue to increase until it reached dangerous levels. Only then did she agree to a further test in a few days, and then my dosage was nearly halved.

[joealx]

http://www.comfortcarechoices.com/index.php?option=com_content&view=article&id=74:when-should-seniors-take-warfarin-coumadin-&catid=36:articles

Warfarin side effects

Edited May 18, 2014 by joealx

[Sheryl]

OP is not suffering from a new clot but rather post-thrombotic syndrome, a little different.

You can definitely get the treatment you need at less cost than in the US though it may take some arranging. China for sure is an option but I would look to Singapore and Hong Kong first, easier to deal with.

[roberta]

Actually I am not sure I can get the treatment I need even in the US. The official "standard of care" is still anticoagulant and compression hosiery, which I have found useless. I have read reports of a few clinical trials, such as the ones by Dr Mark Garcia in Delaware, using catheter-directed thrombolysis, and I did look at that report from China before, but is seems to be experimental.

I sent an email to that hospital in Singapore, but as I expected it has been completely ignored. I shall have to try calling, but experience of calling hospitals has not been good. Some kind of Call Center with a lot of menu choices, and nobody to talk to who knows anything except how to make an appointment with a doctor if one happens to know the name of the doctor. In Bangkok I have given up trying to make such calls and just go there and find someone to ask. But that is not really an option when the hospital is another country. You mention Hong Kong. Any specific hospital? What about India?

[Sheryl]

Singapore I suggest you try a direct approach to the end of their vascular unit who is this woman

http://www.nuhcs.com.sg/patients-and-visitors/our-doctors/our-cardiothoracic-and-vascular-surgeons/associate-professor-jackie-ho-pei.html

her email is <[email protected]>

She is extremely busy so keep it very brief and to the point - you have PTS and are seeking endovascular surgery, does she or anyone she knows do this in Singapore.

In Hong Kong, try http://en.wikipedia.org/wiki/Queen_Mary_Hospital,_Hong_Kong

India - see http://www.hindawi.com/journals/thrombosis/2012/520604/ the authors emails are [email protected] (Ajay Khanna)

[roberta]

Sheryl, Thank you so much for these suggestions. It is most kind of you. I understand the need for brevity; please trust me, I shall not waste anyone's time.

[Lefty]

Actually I am not sure I can get the treatment I need even in the US. The official "standard of care" is still anticoagulant and compression hosiery, which I have found useless. I have read reports of a few clinical trials, such as the ones by Dr Mark Garcia in Delaware, using catheter-directed thrombolysis, and I did look at that report from China before, but is seems to be experimental.

I sent an email to that hospital in Singapore, but as I expected it has been completely ignored. I shall have to try calling, but experience of calling hospitals has not been good. Some kind of Call Center with a lot of menu choices, and nobody to talk to who knows anything except how to make an appointment with a doctor if one happens to know the name of the doctor. In Bangkok I have given up trying to make such calls and just go there and find someone to ask. But that is not really an option when the hospital is another country. You mention Hong Kong. Any specific hospital? What about India?

During my 2 episodes of DVT the doctors at Bumrungrad used Harapin administered intravenously this did desolve the clot but as said before, was in hospital about 10 days.

Re: medical cost in U.S.,are negotiable,50% off original quote is readily doable or shoot for same rate as Medicare would pay hospital/doctors/etc.

Lefty

[rodknock]

i had a dvt in 2005, was forced to retire as they would not sign off for me to go back to work. i was an auto technician.

i am on warfarin for life. big item, they inserted a green field filter in the vena cava minor to help prevent embolisms.

i have my own pt/inr machine and test weekly. goal range 2-3.

[David48]

During my 2 episodes of DVT the doctors at Bumrungrad used Harapin administered intravenously this did desolve the clot

Lefty, sorry mate ... hummm ... I have to disagree despite what the doctors at Bumrungrad may have told you.

Heparin doesn't disolve the blood clot. It is used usually as a 'stop-gap' measure till the Warfin has reached a point where the blood is thin (INR 2-3) and there is a reduced chance of clotting.

Referance below.

Blood Thinners for DVT

Blood thinners (also called anticoagulants) are the most common type of treatment for DVT. The three main types of anticoagulants used to treat DVT’s are heparin, warfarin (Coumadin), and rivaroxaban (Xarelto).

Blood thinners can:

• Keep a clot from growing or breaking off
• Prevent new clots from forming

But blood thinners cannot:

• Thin blood, despite their name
• Dissolve an existing clot

Heparin: People with DVT may receive heparin intravenously or by injection in the hospital for several days. You may also continue the injections at home, once or twice daily. Intravenous heparin requires blood testing, but subcutaneous (under the skin) injections of low molecular weight heparin do not.

Warfarin: As a DVT treatment, you take warfarin (Coumadin) by pill once a day, beginning while you're still on heparin. Treatment may continue for three to six months or more. While on warfarin, you will need regular blood tests to ensure you have the correct dosage -- too little increases your clot risk, too much increases your risk for bleeding. Warfarin can also interact with other medicines, vitamins, or certain foods rich in vitamin K -- making regular monitoring even more important.

[Sheryl]

Note that the Op's problem is not DVT as such but rather post-thrombotic syndrome which is a long-term complication of a DVT. One of the reasons for prolonged anti-coagulation after a DVT is to help reduce the chance of developing PTS.

[roberta]

Note that the Op's problem is not DVT as such but rather post-thrombotic syndrome which is a long-term complication of a DVT. One of the reasons for prolonged anti-coagulation after a DVT is to help reduce the chance of developing PTS.

How does it do that, if it cannot dissolve an existing clot? I understand the benefits in helping prevent new clots from forming, or the existing clot from fragmenting, but is not PTS a result of the persistence of the clot? I do not see how an extended period on Warfarin would have helped with that. Anyway, the standard of care in the UK in 2010, as it was explained to me, was Warfarin for 3 months. After that, I was told, research had indicated that there was little or no benefit in continuing, and that the undesirable side-effects outweighed the advantages. There was no attempt to determine if the the clot had dissolved. The fact that I was free from pain and and edema was taken as sufficient evidence, I suppose - quite wrongly, as it has turned out.

I have made contact with NUH in Singapore, and sent them my medical history. Now waiting anxiously to hear if they will be able to help me there.

[roberta]

I have heard back from NUH, Singapore. The answer is negative. Here is a quote -

" We sincerely apologies, our vascular doctor has replied and they are unable to treat patient.

If it is just a new recovery high chance it can be removed by doing endovenous therapy. The clot is too old for said treatment.

Now the option is not possible. Thank you for your interest in NUH. "

I am devastated.

[Sheryl]

I think what is left is to try to contact the doctor in India whom we know has been doing this procedure and perhaos also the ones in China but India likely to be easier.

As you know this is still considered experimental although there have been a fair amount of published reports.

I have already reviewed available clinical trials for you but no luck there. Though there are some clinical trials of alternating pressure devises meant to alleviate the symptoms of PTS temporarily.

Since we have email for the doc in India (and India easier to deal with than China in terms of language) suggest trying that first.

Your other option of course is just to wait as it does sound like this will; be become more widely available in the next few years.

[roberta]

Thanks again, Sheryl. Yes, I will try to get in touch with the doctor in India, although I have just been refused yet again by another Indian hospital I first contacted several weeks ago, after seeing their very promising website. Again, I quote -

"Thank you for the enquiry. We have forwarded your mail to Dr.Mathew Cherian and giving below his comments.

"Chronic deep venous thrombosis is an extremely difficult disease to treat and I am not in a position to offer any form of definite therapy for you. I am extremely sorry for the same".

Regards,

V.Ramesh
Vice President - Marketing
Kovai Medical Center and Hospital
Avanashi Road, Coimbatore - 641 014.
Ph 0422 4323944 / Mobile - 82200 12455
E.Mail - [email protected]"

Have you any idea how to get in touch with Dr Mark Garcia in the US? I have been unable to find any email or phone number. I know it would cost a fortune to get treatment in the US, but if the only alternative is losing the leg it may be worth trying there.

The longer I wait the worse it will get, and once ulceration and possibly gangrene have set in it may not be possible to save the leg, let alone resolve the thrombosis.

[Sheryl]

http://www.christianacare.org/bodymod.cfm?id=169&action=detail&ref=3068

http://www.christianacare.org/contact

[roberta]

It is time I updated this thread. Having been told by hospitals in Singapore, Hong Kong and India , as well as several in Thailand, that no treatment for my PTS was possible, my last hope was with one more appointment I had made at the private Siriraj Piyamaharajkarun hospital to see a vascular surgeon there. He gave me the same story I had been hearing everywhere else about venous interventional surgery being useless and I should just wear compression stockings and wait to be disabled. However, after my standard protest he told me I should go and see his professor, whom he believed might have a clinic that very evening at Thonburi Hospital. I visited that hospital and found that indeed Ajarn Bpramook would hold a clinic there that day, and I registered for an appointment and returned later in the day.

He showed immediate interest in my case, said he might be able to help me but needed to perform his own duplex ultrasound investigation during his clinic on Friday at the Siriraj hospital (the public one, not the private). He performed this investigation himself, with an audience of six medical students, this being of course the medical school of Mahidol University. He seems tuned in to the latest global developments in vascular surgery, mentioning colleagues from Europe and the USA with whom he would share the results. After this he ordered a full panel of blood tests plus a CT-scan of the entire vascular system of the left leg and abdomen, as he wanted to see in more detail the extent of the clot and whether any of the valvular incompetency could be rectified.

I am now waiting for my CT-scan at Siriraj on June 16, for which I will have to pay about 27,000 baht (is this reasonable? I will pay it of course, I have no choice, but it seems expensive) , and then another appointment with the doctor on June 20 when he will discuss with me what treatment options, if any, are available. I live in hope that there may yet be an alternative to just watching my leg be slowly destroyed.

[Sheryl]

For a CT with contrast (as is necessary when looking at blood vessels) this is about what it would cost at a top end private hospital.

You can get it done for less at this place http://www.mrithailand.com/index.php?lang=en BUT I am hesitant to recommend that you do this given that contrast will be needed, it is an imaging center and not a hospital. A small percentage of people have adverse reactions to the contrast media, sometimes severe, and being in a hospital is safer should that occur. Also, as this is not a usual CT location (in terms of the body part), need to be sure that the imaging techs have clear instructions.

Good luck

[roberta]

Sheryl, Thanks for yet another helpful and informative comment. I guess this contrast thing must be the reason why I have to go nil per orem from early morning on the day of my scan. Sounds a bit like the barium meal that my friend had to consume before undergoing a colonoscopy. Disgusting! But at least I won't need the enema - I hope!

Thanks for trying to help me save a few baht, but I go with what you say about the risk, and my doctor must have given detailed instructions to the radiology staff at Siriraj so I think it is probably advisable to get the scan done there anyway. And I would not be able to get hold of him to fill out a referral form for that imaging center anyway. He is really busy, busy, busy. In fact he had to rush off to some emergency while I was waiting for my CBC results and so I had to talk to a acolyte instead. 27k is a big chunk of change but when it is a "life and death" situation like this is for me I just have to eat it. Yes, I know PTS is not normally life threatening (although the continuing presence of the clot is worrying), but the grotesque swelling of my leg, ankle and foot means no chance of getting a Norwegian Maritime medical certificate at my next annual renewal in September, and so no work, no income, poverty, starvation and this train runs off the tracks. I'm 68, can still work as a consultant offshore as well as ever, but too old by a long way to start a whole new career.