Post-Thrombotic Syndrome is Not in Your Head

PTS Not in your Head Cover

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 changes everything about our lives – right down to the tiniest detail and has 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 upsetting, effects of DVT is Post-Thrombotic Syndrome (PTS) and it is not in your head.

This week, the reminder that yet another thing may be permanently different came to me in a pair of previously-thought 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, I was 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.

My boot

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 can affect 23-60% of patients in the two years following DVT of the leg. Of those, 10% may go on to develop severe PTS, involving venous ulcers (Wikipedia.com). While some people who have had a DVT recover completely, others may be left with some symptoms in legs (or arms) that may never go away.

Per the National Blood Clot Alliance, an estimated 330,000 people in the United States have the PTS. Typically, the more extensive the DVT, the more severe the symptoms of PTS will be. However, this is not always so: even people who have had very extensive acute DVTs with severe symptoms may recover completely and may not be left with any long-term symptoms.  Approximately 60% of patients will recover from a leg DVT without any residual symptoms, 40% will have some degree of PTS, and 4 % will have severe symptoms. The symptoms of PTS usually occur within the first 6 months, but can occur up 2 years after the clot. If a patient has done well for 1⁄2 – 2 years after the clotting event it is highly unlikely that he or she will develop PTS.  Little is known as to who will develop chronic symptoms, such as skin ulcers, and who will not.

The symptoms of PTS (per the National Blood Clot Alliance) include:

  • Chronic extremity swelling
  • Chronic (or waxing and waning) pain
  • Unspecific discomfort of the extremity
  • Diffuse aching
  • Heaviness, tiredness and cramping of extremity
  • 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)
  • Atrophie blanche or white atrophy (small areas of white-gray scar tissue)
  • Dermatoliposclerosis (an inflammation of the layer of fat under the epidermis)
You mean it’s not 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 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 are 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 are often 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 extremity at rest and at night
  • Compression stockings, grade 2, get them fitted by your doctor (although recently research is conflicting on the effectiveness of compression stockings)
  • Weight loss
  • Increased exercise with strengthening of extremity muscles
  • Pain management (medication, visiting a pain clinic)
  • Compression pump (battery-powered device used when stockings fail to work)
  • Vascular interventional radiology procedure: balloon opening and stenting of 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 changed 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 health care provider to look at your leg. Only a health care provider can tell you if your problems are from a new blood clot or from PTS. Since it can take 3 to 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 the self-esteem, especially if you have been working your whole life. Visiting a social worker, therapist or psychologist may be helpful in facing some of these issues.

Once I have PTS, will it ever go away?

Currently there are no procedures to correct the veins that contribute to PTS. It is typically a lifelong diagnosis that needs continually managed.

Where can I find more information?

Click on the links below for more information about PTS, including symptoms, treatment and care-

Share your story. Are you suffering from PTS? Do you wear compression stockings? How are you dealing with your diagnosis?

There is hope for healing and you are not alone,

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