Post-Thrombotic Syndrome

What is post-thrombotic syndrome?

Post-thrombotic (postphlebitic) syndrome is a condition that occurs as a complication of deep vein thrombosis (DVT). DVT is the formation of a blood clot in one of the deep veins in your leg or arm. Even with successful DVT treatment, the blood clot can cause lasting damage to your veins. This damage prevents your veins from working as well as they should.

As a result, blood pools in your veins. This pooling of blood raises the pressure in your veins and causes symptoms like pain and swelling. Post-thrombotic syndrome is the medical term for the range of symptoms this vein damage can cause. Some people experience mild symptoms, while others have severe symptoms that greatly affect their daily life.

If you’ve had DVT in the past two years and have symptoms of post-thrombotic syndrome, see a healthcare provider right away. They’ll evaluate your condition and recommend appropriate treatment to help you feel better.

How common is this condition?

Post-thrombotic syndrome is common among people who’ve had DVT. It affects 20% to 50% of people within two years of their DVT diagnosis.

If you have post-thrombotic syndrome, blood in your damaged vein has a hard time making it back to your heart. Pooling of blood in your vein can cause pain and other symptoms.

What are the symptoms?

Post-thrombotic syndrome symptoms occur in the limb (leg or arm) where the DVT happened. Symptoms that you may feel in your affected limb include:

• Pain (claudication).
• Cramping or aching.
• A feeling of heaviness or tiredness.
• Itching (pruritus).
• Abnormal sensations like pins and needles (paresthesia).

Symptoms can range from mild to severe. You may notice your symptoms get worse when you’re walking or standing for a long time and ease when you rest. Symptoms may also feel worse later in the day. You may notice symptoms constantly, or they may come and go.

What are the signs of post-thrombotic syndrome?

Signs are things you can see when looking at your leg or arm. Your provider will also look for these signs during an appointment. The signs of post-thrombotic syndrome include:

• Swelling (edema).
• Red or discolored skin.
• Thickened skin.
• New varicose veins.
• Spider veins.
• Venous ulcers (in severe cases).

What causes post-thrombotic syndrome?

Deep vein thrombosis (DVT) damages your veins. This damage can cause post-thrombotic syndrome.

The deep veins in your legs and arms contain one-way valves. These valves help keep blood flowing back toward your heart. But the formation of blood clots in your vein can cause lasting damage to those valves, preventing them from working as they should.

As a result, your blood flow grows sluggish. Instead of moving efficiently toward your heart, blood pools in your veins. This raises the pressure inside your vein walls and leads to symptoms.

What are the risk factors for this condition?

Anyone who’s had DVT is at risk for post-thrombotic syndrome. However, you face a higher risk if you’ve had recurrent DVT, especially in the same limb. This means you had more than one episode of DVT affecting the same leg or arm.

You may also face a higher risk if the blood clot you had in the past:

• Affected a large portion of your vein.
• Formed in your upper thigh or pelvis (proximal DVT), as opposed to your calf (distal DVT). In particular, your risk is higher if the clot formed in your iliac vein or common femoral vein.
• Formed in a larger vein of your upper body, like one in your shoulder or upper chest (axillo-subclavian vein thrombosis).
• Didn’t fully go away after treatment (residual thrombosis).

Additional risk factors include:

• Having pre-existing chronic venous insufficiency (CVI).
• Having a BMI (body mass index) above 30 (having obesity).

How do healthcare providers diagnose post-thrombotic syndrome?

Healthcare providers diagnose this condition with a physical exam. During the exam, your provider will:

• Ask about your medical history.
• Ask about your symptoms and how they affect your daily life.
• Examine your legs and arms to check for signs of post-thrombotic syndrome (like swelling or skin changes).

Based on this information, your provider will determine if you have post-thrombotic syndrome. They’ll also assess its severity.

Villalta scale

You may hear your provider mention the Villalta scale. This is a standard numeric scale providers commonly use to diagnose this condition. You can think of it as a checklist with points attached. It includes five symptoms and six signs. For each symptom and sign, your provider assigns a point value:

• Zero: Not present.
• One: Mild.
• Two: Moderate.
• Three: Severe.

Your provider then adds up the points to reach a diagnosis. A total of less than four points means you don’t have post-thrombotic syndrome. A total of five or higher means you do.

Providers further break down the scoring to determine if you have a mild, moderate or severe form of the condition:

• Five to nine = mild.
• Ten to 14 = moderate.
• Presence of ulcers, or 15 and above = severe.

Your provider will share the findings with you and discuss what they mean.

What tests diagnose this condition?

There’s no specific diagnostic test for post-thrombotic syndrome. However, in some cases, providers order duplex ultrasound testing to check blood flow through your veins.

What is the treatment for post-thrombotic syndrome?

Treatment commonly includes compression therapy, lifestyle changes and exercise. Some people need surgical procedures or venous ulcer care. Healthcare providers tailor treatment to each person’s individual needs. The goals of treatment include easing your symptoms and improving your health-related quality of life.

Compression therapy

Your provider may recommend you wear compression stockings. These are a common form of compression therapy that can ease your symptoms. You wear the stockings regularly (often daily) according to your provider’s instructions. The stockings squeeze your calf muscles to improve blood flow in your veins. They should feel snug but not painful.

There are different types of stockings that provide varying amounts of pressure. Your provider will prescribe the proper stockings for you based on your needs.

You may need time to adjust to wearing compression stockings. It’s important to talk to your provider about how they feel and whether you’re able to wear them as prescribed. Your provider may adjust the level of pressure as you go along based on how you’re feeling and whether the stockings provide enough symptom relief.

Other forms of compression therapy your provider may recommend include:

• Venous-return assist device (Venowave®). This is a medical compression pump you wear on your calf to improve blood flow. You wear this device at home or during your normal routine.
• Intermittent pneumatic compression (IPC) device. An IPC device is a compression sleeve you wear on your leg in a hospital setting.

Lifestyle changes

Lifestyle changes can play a big role in improving your symptoms. Your provider may recommend you take these actions:

• Elevate your legs above the level of your heart when you’re sitting or lying down.
• Achieve a body weight that’s healthy for you.
• Use moisturizers on your skin to prevent dryness or cracking.

Exercise

Exercise may help improve blood flow and relieve your symptoms. For example, if post-thrombotic syndrome affects your leg, your provider may recommend exercises that strengthen your leg muscles.

That’s because your calf muscles act as a powerful pump that healthcare providers call a “second heart.” When you walk, the squeezing action of your calf muscles helps blood return to your heart from your legs and feet. So, strengthening those muscles can give your veins the help they need to keep blood moving.

Exercise can also improve your flexibility and cardiovascular endurance. Be sure to talk to your provider before starting a new exercise routine. They’ll make sure you’re doing exercises that are safe and helpful for your needs.

Surgical procedures

In select cases, providers recommend surgery or an endovascular procedure (like stenting) to improve blood flow in your veins. Your provider will tell you if such treatment options are suitable for you.

Venous ulcer care

Severe cases of post-thrombotic syndrome can lead to venous ulcers. Careful, diligent treatment is essential to avoid serious complications like amputation. Your provider will recommend one or more of the following:

• Antibiotics.
• Bandages or dressings to cover the ulcer.
• Compression bandages or stockings.
• Daily wound cleaning.
• Ointments.
• Pain relievers.
• Procedures (debridement) to remove dead tissue.
• Referrals to specialists who can help you manage chronic conditions, like diabetes.

Can post-thrombotic syndrome be prevented?

You can’t always prevent post-thrombotic syndrome. That’s because it’s not always possible to prevent deep vein thrombosis (DVT). However, you and your provider can work together to lower your risk by:

• Identifying and reducing your risk factors for DVT. The most effective way to prevent post-thrombotic syndrome is to prevent DVT. Work on lowering risk factors you may be able to change. For example, avoiding tobacco products, being more active and maintaining a healthy weight can help lower your risk. Your provider will tell you which risk factors to target and help you develop a plan.
• Diagnosing and treating DVT early and appropriately. If you develop DVT, early diagnosis and treatment can minimize damage to your veins. It can also help prevent a DVT recurrence down the road, which raises your risk for post-thrombotic syndrome. Your provider will determine the best treatment plan for you. This typically involves anticoagulant medication for several months or longer.

How long does post-thrombotic syndrome last?

Post-thrombotic syndrome is a chronic condition. That means your healthcare provider can help you manage it, but there’s no cure. Treatments can help ease your symptoms and improve your ability to work, socialize or do other things you enjoy.

How do I take care of myself?

Your provider will offer guidance for how to care for yourself at home. Follow it closely and ask questions if anything is unclear. General tips include:

• Take your medications exactly as prescribed.
• Elevate your legs when sitting or lying down.
• Avoid sitting for too long, when possible. Take quick breaks to walk or stretch.
• Use moisturizer on your skin to help it stay healthy.

It’s also important to pay attention to your mental health. Living with post-thrombotic syndrome can take a toll on how you feel mentally and emotionally. People with this condition often experience depression, anxiety and a general loss of self-confidence. You may worry about blood clots returning. You may miss some of the activities you used to do, which are now more difficult because of your symptoms.

If this sounds familiar to you, it may help to speak with a counselor or therapist. They can help you work through these emotions and find solutions to help you feel better.

When should I see my healthcare provider?

Your provider will schedule follow-ups to monitor your condition. It’s essential to go to all of these appointments so your provider can adjust your treatment plan as needed.

Call your provider any time you have new or changing symptoms.

What questions should I ask my provider?

Some questions that may help you learn more about your diagnosis include:

• Do I have post-thrombotic syndrome? If so, how severe is it?
• What treatments do you recommend for me?
• What lifestyle changes should I make?
• What exercises are suitable for me?
• What’s my outlook?

A note from Cleveland Clinic

A diagnosis of post-thrombotic syndrome can bring many questions and concerns to your mind. Be assured that your healthcare provider is there to answer your questions and guide you through treatment. This condition is common, but your needs and concerns are still unique. Work with your provider to get resources to support your physical and mental health.