In the first days, weeks, and even months after being released from the hospital there is a lot to worry about – medications, doctor’s appointments, follow-up care – not to mention an adjustment to a whole new lifestyle, one that might even be filled with pain, new feelings and worry. Experiencing a DVT, PE, or other blood clotting incident can change everything about our lives – right down to the tiniest detail. It can have far-reaching effects that we might not even notice until months or years down the line. It can be the smallest changes that affect us in big ways. One of those long-term, and potentially disabling complications is post-thrombotic syndrome (PTS).
The reminder that yet another thing may be permanently different came to me in a pair of previously-deemed cute pair of winter boots. I did it right. I kept the heel low, got the pair with the calf extender, and made sure they weren’t too stiff. I tried them on, walked around the store, and wore them at home. Of course, the second day I wore them outside, I realized I couldn’t handle them. Not only could I not handle them, but I was also afraid of them. I took them off in a fit of panic, actually, and drove home in my socks. I can no longer stand the feeling of something around my calf, even if it is not tight. I can’t do it. That set me back a little; I got angry (I used to love high boots), I was disheartened and I decided I won’t look cute this winter.
Even though I am 17 months out from my DVT and resulting PE, I still experience symptoms that are similar to that of the DVT. I have experienced pain, swelling, tenderness, skin discoloration, and itching. All are symptoms of PTS and can range from mild to severe. PTS develops in 20% to 50% of patients with DVT, even when appropriate anticoagulant (blood thinner) therapy is used to treat the DVT. Manifestations of PTS vary from mild clinical symptoms or signs to more symptoms such as chronic leg pain that limits activity and the ability to work, intractable edema, and leg ulcers. PTS can adversely affect the quality of life and productivity and it can also be costly.
PTS is a frequent complication of DVT. It develops in ∼20% to 50% of patients within two years of diagnosis and is severe in about 5% to 10% of cases. About 6 of 10 patients can expect to recover from DVT without any residual symptoms, 3 of 10 will have some degree of PTS, and 1 in 10 to 1 in 20 will have severe PTS, which can include leg ulcers. You can read more about how often PTS occurs from the American Society of Hematology.
The symptoms of PTS may include:
- Chronic extremity swelling
- Chronic (or waxing and waning) pain
- Unspecific discomfort of the extremity
- Diffuse aching
- Heaviness, tiredness, and cramping of extremities
- Dark skin pigmentation
- Bluish discoloration of toes/fingers, foot/hand, or diffusely of leg/arm
- Skin dryness
- Eczema
- Hardening of the skin
- Formation of varicose veins
- Skin ulcer (stasis ulcer)
- Small areas of white-gray scar tissue
- Dermatoliposclerosis (inflammation of the layer of fat under the epidermis)
Is how I am feeling all in my head?
No, PTS is not in your head! When a clot forms in a vein, the valves inside the vein can be damaged by the clot or by the surrounding inflammation. The damaged valves (as well as a residual clot) block blood returning from the leg veins back to the heart, which results in increased venous pressure in the leg, thus contributing to PTS (Vascular Disease Foundation). The pain you feel weeks, months, and even years after your DVT is very real in most cases, stemming from PTS.
I’ve had a DVT, can I prevent PTS?
As with many health ailments, prevention is the key when it comes to PTS. Wearing custom-fitted compression stockings is the best way to prevent PTS. Stockings often do not work because they are uncomfortable, but they should be to help reduce your risk of developing PTS in the long run. They should be worn during the day and while standing. You should not wear them at night. They should be worn for weeks, months, or years to control symptoms. As long as you continue to experience any type of leg swelling, wear compression stockings.
I’ve had a DVT and now have PTS, can my symptoms be treated?
There are several things you can do to help ease the pain of PTS, including:
- Elevation of extremities at rest and at night
- Graduation compression stockings (ask your doctor if this is a good option for you)
- Weight loss, maintaining a healthy weight
- Increased exercise with the strengthening of extremity muscles
- Pain management (medication, visiting a pain clinic)
- Compression pump (a battery-powered device used to stimulate blood flow)
- Vascular interventional radiology procedure: balloon opening and stenting of the narrowed vein (procedure to keep the vein open)
I have ulcers, what should I do?
As with any symptoms of PTS, keep your doctor informed of any changes or new experiences. Visits with a vein or wound care specialist may be helpful to get the best care for ulcers.
How do I know I have PTS and not a new blood clot?
Many of the signs of PTS are the same as those for new blood clots in the leg, so it is very important for you to ask your healthcare provider to look at your leg. Only a healthcare provider can tell you if your problems are from a new blood clot or from PTS. Since it can take 3 – 6 months for your blood clot symptoms to get better, it is important to discuss any new or different symptoms with your doctor as soon as possible. PTS pain and swelling symptoms will tend to lessen with rest and elevation, but would not lessen if you are suffering from a blood clot.
Emotionally, I’m a mess, is that part of PTS too?
PTS is a frequent side effect of DVT. Symptoms can come and go over time, but PTS is a chronic, lifelong condition. PTS leads to suffering and disability and is costly to society in terms of treatment. The physical and psychological implications of PTS are very real. If you were very active before PTS or worked a certain occupation, symptoms may make it difficult to return to your previous level of activity. Oftentimes, it is hard to adjust our level of expectations for ourselves while we slowly recover or make adjustments in our activities. In terms of work, some patients are forced to pursue a new line of work or even file a disability application, which can be devastating to their self-esteem, especially if they have been working their whole life. Visiting a therapist or psychologist or another trusted individual may be helpful in facing some of these issues.
Once I have PTS, will it ever go away?
Currently, there is not one way to correct the veins that contribute to PTS, but there are several things that can help. PTS is typically a lifelong diagnosis that needs continually managed.
Reader Writes In: Are you suffering from PTS? Do you wear compression stockings? How are you dealing with your diagnosis?
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Click on the links below for more information about PTS, including symptoms, treatment, and care-
- Your Guide to Compression Stockings
- All About PTS (American Society of Hematology)
- Focus on PTS Flyer (Vascular Disease Foundation)
- Join the private group on Facebook
