clotting disorders

CALF VS. THIGH CLOTS

I recently experienced a skiing injury that tore my ACL. A few days later, I developed intense pain and swelling in my calf and sent immediately to the hospital. The ultrasound identify a clot in my perioneal vein and soleal. It has been nearly 30 days since the start of treatment. I had another ultrasound yesterday and the technician could not find my periotoneal clot. *good news* She also said my veins look fine. The clot in the soleal sinus is still there (she said it will likely remain there). My question is: if my clot is gone, do I need to continue treatment for the remaining five months and if so, how important is it that I do so?

Thank you!
Michelle

The vein that your clot was in is in the lower part of your leg, or the calf.

When we treat DVT, the goal is to prevent the clot from traveling to the lungs, a pulmonary embolism. The goal is NOT to dissolve the blood clot but to prevent more serious complications. The likelihood of a thigh clot going to the lung is very very high. Therefore, every thigh clot, or proximal DVT must be treated for the full duration of therapy to prevent adverse outcome. However, the likelihood of a distal, or calf clot, traveling to the lungs means that it must first travel or grow to involve the thigh. Then it must move to the lung. The likelihood of a calf clot moving is low or about 20% in some estimates.

Therefore, there are two different schools of thought. The first is that if the clot is in the calf, if it is going to move it probably will do so within the first month. So, every week an ultrasound can be done to see if the clot moves. If it does not, then blood thinning medication may not be needed. If it does, than medication is recommended. Some others, recommend it safer to give everyone with a blood clot blood thinning medication for the entire duration to prevent problems. Some studies only included patients with clots in the proximal region, therefore, we have better information on how those patients should be treated.

There is a significant risk of a blood clot with any knee injury, greater than 50% likelihood. So the clot you developed is not unexpected.

I would recommend that you discuss this further with your doctor and not make a premature decision that may affect you adversely in the future.

EXERCISE AND BLOOD CLOTS

Dear Sirs

I have recently turned 44, and in May this year started with swelling of my right leg. It took 4 doctors to get what I hope is the right diagnosis. When I was 18 I had three occurrences of Mild Vein Thrombosis within 6 months but wasn’t given any treatment and told to exercise and this would disperse the clot, which it did. But earlier this year I had some swelling and loss of sensation in the right leg when exercising which ceased on rest.

My question is can I exercise? My consultant says no, two doctors say yes and a physiotherapist said definitely not. I am hungry for information to completely understand my condition but I am finding it very difficult to source good help/advice. Can you help me? I was a very active person and I am finding this sitting around a little difficult to accept, I do work in a busy office where I am personal assistant to two directors. Please please please help

For many years we have thought that if you move around then the blood clot in your blood vessel may also move and if it moves to your lung it may cause serious problems. Therefore, we had previously always recommended best rest initially after being diagnosed and then for a period of time after. New information demonstrates that this is not the case and often times persons initially diagnosed with a blood clot are treated as an outpatient and go to work and walk around with some activity without adverse outcome.

New data demonstrates that exercise increases blood flow and also decreases edema by utilizing the muscles. Therefore, exercise in moderation that is not contact with risk of trauma is recommended. When you begin to exercise, you may note additional swelling in the affected leg. This is often bypassed with the use of compression hose and with rest and elevation of the leg after exercise. It is more cosmetic than dangerous and therefore safe.

PREGNANCY AND BLOOD CLOTS

fran

There are certain inherited abnormalities that make one prone to blood clots especially during pregnancy or hormone use. This includes the Factor V Leiden mutation, Antithrombin III deficiency, and Anticardiolipin Antibody. Therefore, screening for these abnormalities should be done and will help to identify your future risks. This may be the test your doctor was looking to run. Lovenox is the standard of care for treatment during pregnancy as it is easy to administer at home and safe for both you and the baby. (see page on low molecular weight heparin for more information). Usually the children are fine, the only problem will be as to whether you plan the delivery so that you can stop the heparin in time to receive epidural anesthesia. Some obstetricians induce the baby so that you can plan the birth date and know when to stop the heparin. The medication and the clot affect you and will not affect your child.

As to the second question, the usual recommendation is that with two blood clots life long treatment with anticoagulants are needed. However, noone has studies this just in pregnancy induced clots. I would begin with determining if there is another explanation for the clot, ie blood testing, as this may help to determine whether you need therapy for life or not.

In November my nephew was in a terrible car accident. Resulted in severe head trauma. He had emergency surgery and has been doing much better until recently when it was discovered that there is a blood clot in his left thigh and calf. On Friday we found out the a piece of the clot had broken off and traveled to his lung. We have received conflicting treatment recommendations from the hematologist and the vascular team. One says he should have a surgical procedure in which a "basket" is to be inserted to catch any other pieces that might break off. The one says we should do nothing and keep watching the clot. Obviously, my family is very torn as to which direction is the best for my nephew. At this point we would like to get a second opinion. However, we aren't quite sure how to go about this. Do you have any advice.

Patients with blood clots in their legs or lung are usually treated with blood thinners. However, in patients with serious risk of bleeding complications, blood thinners are dangerous and cannot be used. Therefore, in order to prevent the blood clot from moving to the lung which may result in death, a wire basket may be placed through the groin. This does nothing to help prevent additional blood clots, it only acts as a barrier to prevent the blood clot in the leg from travelling to the lung. It is effective in 90% of patients, but not 100%. In addition, there may be complications with the placement of this basket and also it may become ineffective after a period of time.

The basket, called an inferior vena cava filter, may be placed by a radiologist or a vascular surgeon. There are several different types available and have been readily used for many years.

The concern in your nephews case is probably that the head trauma may not have healed and that additional bleeding into the brain may occur with blood thinners. I assume you were given reasons by both specialists as to why the basket should or should not be placed. First, I would ask you to meet with both of them and have them explain their reasoning in terms that you can understand in order to make a decision. Also, it is important that the two of them discuss the medical case and come up with the best option for your family member. While differences of opinion often occur among specialists, they usually are able to come up with a solution that best fits the situation. As for obtaining a second opinion, if discussing this further with the doctors involved does not help in coming up with an acceptable answer, I would ask the physician in charge of your nephews case if there is someone else that comes to that hospital that may have expertise in this area to help give an opinion. Depending upon the hospital size, this may already have been done, or may be difficult if you are in a small hospital. In specialty practices where there is more than one physician in the group, the associates commonly discuss cases to come up with an answer. Your physicians may have already done this, therefore a formal second opinion may not be necessary.

Do you have any information regarding vein occlusions in the eyes, or vein or artery biopsy's in the neck or head? i saw this address on a clinic in nevada site ...thank you

There is little data on retinal vein occlusions and their potential
connection with hypercoagulable states. Very few are identified as having an underlying abnormality that makes one prone to blood clots, but it is
possible, and if one has an occlusion at this site, additional blood tests
should be obtained to identify the potential risk of recurrent blood clots.
As far as biopsy's in the neck or head, this is a very vague area and I am
uncertain how to respond with the information given.

Please can you advise me . I had a heart by-pass in 1991 within days I had a blood clot in my lower-leg, this left me with what looked like a brown stain covering most of my lower limb. Now ten years on, my leg and foot are as your web page describes, painful, swollen shinny and very red.

My question is, It is only now, after ten years the symptoms have appeared, Is this normal, and if so, what if anything can be done.

Please advise me many thanks. gordon

Dear Gordon:
Unfortunately, the post phlebitic syndrome occurs many years following the initial clot without reaching a period of time when it stabilizes.
Therefore, many patients only realize the effects many years, such as you
did, after the initial blood clot. The changes in color are related to skin
thickening and blood supply due to the previous clot. Elevation and support
hose may improve the condition somewhat.

Thanks for the info on your website regarding post-phlebitic syndrome --
which I live with. With regard to the permanent damage done to the valves following a DVT (such as in my case), is there such thing (yet) as a vein transplant?
Thanks
Steven

Thanks for your interest in our web site.
In answer to your question, veins are very small and collapsable in contrast
to arteries which have muscular walls. Therefore, veins, at least the small
ones, cannot be transplanted. Depending upon the amount of damage your legs have, there are several options from a cosmetic point of view including
sclerotherapy (injecting medicine into the vein to cause them to collapse)
and laser or light therapy used for smaller veins. As for correcting the
valvular problem, there is nothing that I am aware of as the pressures change the flow and cause "collateral" blood vessel flow.
Scripps clinic had an aggressive vascular medicine department run by
radiology who specializes in many of the invasive procedures.
Also, the cleveland clinic foundation in Ohio has a vascular medicine
department where they are researching this area and may have newer techniques to help if you are quite bothered. My usual response is to leave well enough alone if your veins are not too unsightly or painful as modifying the venous flow may have additional repercussions later on.

I AM SUFFERING FROM DVT AND HAVE BEEN ON WARFIN MORE THAN 40 DAYS. YET NO DOCTOR CAN TELL ME WHETHER MY BLOOD CLOT HAVE BEEN GONE OR NOT AS MY LEG IS STILL NOT WALKING PROPERLY, WITH PAIN, AND THE WHOLE CALF MUSCLE IS STILL SWOLLEN.

If you do ultrasound examinations in patients who have had a leg DVT, at 6 months no patients has had complete resolution of the clot. Instead, the body forms new blood channels around the clot and through it to improve the pressures. Therefore, there is no "test" that I would recommend to see if the clot is gone, because the damage that has been done to the veins will have some permanency. However, the symptoms you complain of should improve with appropriate therapy. First, it is important that you keep your warfarin level at a therapeutic level to thin the blood. This should be carefully watched. In addition, you should be wearing support hose with 30 mm of mercury. Knee high are as good as thigh high and more comfortable. These should be put on in the morning and removed at night. Exercise should not be avoided as it stregnthens the muscles that will help to pump the leg muscles. Usually with conservative measures and time, the sympoms improve markedly.

My wife had a laparotomy in January for suspected Crohn's disease which turned up nothing. In March, she got a first DVT diagnosed by ultrasound. There was severe pain in the left calf but no swelling, no discoloration and no Homans.
She was heparinised and placed on Warfarin for 6 months (median INR 2.2) which has now been stopped since 2 weeks. The pain has continued and continues, making it hard for her to walk. Her general practitioner advises continued use of compression hose and dihydrocodeine tablets saying it (the pain) must be either a muscle strain or postphlebitic syndrome. May I please ask you if you think my wife should continue to be patient with this horrible pain or do you think, in these circumstance where the pain just won't go away, that I should insist on a specialist opinion. What kind of specialist would be best?
Thanks
Geoff (UK)

It is unclear from your letter if the pain ever resolved with initial treatment. If it resolved and returned, I would recommend she be reevaluated for a new thrombus. It is important to exclude another cause of the pain before attributing this to postphlebitic syndrome. Make certain that the compression hose has at least 30 mm of pressure and
there is no swelling. Also, exercises to stretch the muscles may be of benefit once a repeat DVT has been ruled out. Some persons have continued pain after appropriate treatment because of postphlebitic syndrome but this
usually improves with time and worsens with prolonged standing. Before seeing an additional physician, I would recommend further evaluation to rule out other abnormalities be persued. If this fails to improve

If diagnosed with DVT and the lovenox and coumadin does not work is their
any other procedures to open the vein or help it? I have been taking these
medications for seven weeks. My doctor has stated there is nothing else to
do for it. Is this true?

A majority of patients treated with appropriate doses of anticoagulants
achieve results. A minority of patients present with a clot that is so
large, or becomes so large, that it threatens the blood flow to the limb.
This is called phelgmasia and is an emergency. Without treatment to dissolve or remove the clot, the limb will die from lack of blood flow. This is
accompanied by severe pain and infection with high likelihood of death. If
you had this complications, you would not be writing this e mail today.
More likely, you have postphlebitic syndrome causing persistent swelling.
If you do ultrasound examinations on all patients with a DVT, almost all will
have persistent defects associated with the DVT. This does not mean that
they have failed therapy. Response to treatment is a clinical one with
gradual decline in the swelling, pain, and discoloration.

Hello,

I have been searching for info on my condition for years and this site is very interesting.

Let me start by introducing myself: I am now a 36 year old male. I experienced my first clot in Oct. 1988 when a clot lodged between my heart and lung while I was in the Army. Since that time I have had another PE and way to many DVTs. I have had a Greenfield Filter put in due to the fact that I have formed clots while on Coumadin. I have had several Doctors work on me from Hematologist to regular MDs and they all say the same thing "We do not know what is causing this." I am on 10mg and 7.5mg alternating days. They try to keep my INR at 2.5 but it will drop or skyrocket.

My Docs and I are at a loss for this, no one else in the family has any kind of clotting problems. A Hematologist from Detroit said in all the years he has done this (25+) he has seen only 2 other cases like mine.

Can you please give me any pointer to try and find the problem or problems?

Thanks,
Phil

Thank you for logging onto our web site.

In about 50% of patients we are able to identify an abnormality in the blood that is associated with clotting. This is a major advance compared to years ago when that number was about 12%. There is much information and research being done in this area and I suspect that in the future that number will increase. That means that half of all patients with recurrent clots have an abnormality that we have not yet been able to identify. This is the category that you fit in, assuming that your physicians have done extensive testing to include: anticardiolipin antibody, antiphospholipin antibody, beta 2 glycoprotein I, dilute russell viper venom time, Prothrombin Gene defect, Homocysteine, MTHFR defect, fibrinogen (clottable and antigenic), activated protein C resistance, Antithrombin III activity, Free protein S activity, and Protein C activity. In addition, some hematologist disorders result in excessive clotting including abnormalities of proteins, and Paroxysmal Nocturnal Hemoglobinuria. The reason to explore these options and look for a cause is because some disorders may respond to different treatments. I would encourage you to follow with a specialist regularly as when new abnormalities are identified, you may be retested and perhaps a "name" for your disorder will be found.

In addition, some research centers such as in Boston and Scripps have researchers working on this and if you are in these areas, a second opinion and evaluation may be worthwhile.

Good luck to you.

Hello, my name is Tina and i have been trying to find someone that i could write to and try to find out some information. I am a 41 year old white female and I have been having this problem since i was 15 years old. I am at the point now that i am developing clots in my right kidney and am suffering a lot. When it first started, i got a blood clot in my right leg, was rushed to the hospital and have been on warafin (coumadin) ever since. I was finally tested and diagnosed with hypercoagulable syndrome several years ago. I have both protein c and s deffiencies in my blood. I fell last year and broke my right ankle and had to have surgery to repair the breaks. After that i developed staph infection 2 times and that required 2 more operations and also i had to get a pic line and was on 1000 milligrams of vanc a day for 6 weeks. Since that time, my inr has not been right. Just yesterday, i went and had my blood tested and they called me back and said that my inr had dropped to 1.7 and the doctor that i go to wants it between 3.5 and 4.0 because of all the problems that i have had over the years. I was taking 8 mgs a day and they increased it to 20 today 10 on Mon, Wed and Fri and 8 all the other days. That seems like a big increase to me and i guess the reason that i am writing to you is to find out if there is not something that could be done and to see if there are more people out there that are having to suffer the way that i am. My body is worn out from having the clots in my kidney, i stay in so much pain and all i have been told is that that is all they know to do for me and i guess that i wanted to find out from somebody else if there was something that could be done and if so what would it be. Thank you for reading this and if you have any suggestions, please e-mail

Thank you for logging onto our web site.
You say that you have a "hypercoagulable state", however you do not define what one you have. It would be exceptionally rare for you to have both protein C and S deficiency since they are both exceedingly rare. Two together would be like winning megabucks, not likely. Therefore, it is important that you review the links under clotting disorders to see what other testing should be ordered to further define what specific abnormality you may have as they may be treated differently. If you were on warfarin when the labs were drawn, both the protein C and S would be falsely low due to the warfarin. I would recommend that you have full testing to include an activated protein C resistance, Prothrombin gene mutation, homocystein level, MTHFR defect evaluation, anticardiolipin antibody, antiphosphatidylserine antibody, and beta 2 glycoprotein I. In addition, people with kidney abnormalities often have Antithrombin III deficiency. This too should be checked. All these values should be sent to a specialty laboratory as a regular laboratory often gives false levels.

If you are such high risk of clots, Low molecular weight heparin may be an option when your INR is too low as you are not protected as well with an INR of 1.7. It is also important that the level be adjusted weekly. To take 20 mg on some days and 8 on others is NOT recommended. Too much of a difference and you will have trouble becoming therapeutic. You do not say where you live, but I would recommend you see the site anticoagulation forum www.acforum.org. This has a listing of coumadin clinics where they specialize in monitoring the INR and dosing warfarin.
After they find out what abnormality you have, your family members (children) should be tested as this may be hereditary.
I will post your message on the board for others to benefit.
Good luck to you and please keep us posted as to how things go
rinah Shopnick

Have you ever heard of an ankle to knee blood clot not being treated with blood thinners? Five years ago I was diagnosed with this extensive blood clot in my right greater saphenous vein, it did not resolve for three months and extended into my communicating veins as well. I have had pain and swelling ever since.

When one treats blood clots, it is important to differentiate between superficial blood clots and deep blood clots. this refers to the location in the circulatory sytem. The indication to treat any clots is primarily to prevent them from developing into blood clots in the lung which may cause death and lung injury. this is the only reason to treat clots. Because of the way in which the circulation flows in the body, the risk of lung clots (PE) with superficial clots is not of concern. Therefore, there is NO reason to treat them. The body will normally, with time, develop new routes for blood to flow and also dissolve the blood clot returning a near normal, but not normal, circulation. the medication that we use to treat blood clots, to thin the blood, warfarin and heparin, does not dissolve the clots, It only decreases the clots from growing larger.

Superficial clots are treated conservatively with rest, elevation, sometimes support hose and nonsteroidal anti inflammatories. The risk of bleeding with blood thinning medications does not warrent the use of these agents with superficial clots.

Send mail to rshtcn@aol.com with questions or comments about this web site. Last modified: March 02, 2008

Send mail to rshtcn@aol.com with questions or comments about this web site.
Last modified: March 02, 2008