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Fact Sheet
Post thrombotic syndrome (PTS)
- chronic disorder that may develop after a patient has a clot in the deep veins of the legs (DVT).

Post thrombotic syndrome (PTS) *


Overview

Post thrombotic syndrome (PTS) is a chronic (long term) problem that develops after a patient has a clot in the deep veins of the legs (deep vein thrombosis;DVT). PTS develops because the clot blocks blood flow returning to the heart leading to increased pressure in the veins of the legs.

What are the main symptoms of post thrombotic syndrome (PTS)?

The increased pressure in the veins may lead to problems of pain, swelling and changes in the skin including the development of ulcers (also called venous ulcers or stasis ulcers). Other symptoms of PTS include cramps, itchiness and heaviness of the legs.

How often does PTS develop?

It has been estimated that 1 in 3 of patients who develop clots in the veins of the legs will develop some symptoms of PTS.

Why does PTS develop?

The exact reason why PTS develops is not known. Blood clots and blockage in the veins leads to increased pressure in the veins. This disturbs the blood circulation of the legs leading to the symptoms of PTS.

Can PTS be prevented?

It is important to try and reduce the risk of developing PTS after developing a clot in the legs. An important way to decrease the chance of developing PTS is to use compression stockings.

(See information sheet on Graduated Compression Stockings).

Use of Compression Stockings

Compression stockings can be used to reduce the swelling, improve blood flow in the legs and avoid the risk of developing PTS. Compression stockings need to be used for a long time after developing a clot in the legs.

What can be done for PTS once it has developed?

Once PTS has developed it is difficult to manage. Prevention is important but once the symptoms of PTS have developed there are some approaches to decrease the symptoms.

Elevation & Compression

The main way to decrease the symptoms is to reduce the pressure in the veins by elevation of the leg where possible and to use compression stockings. Specially designed compression stockings are available for people who have problems with PTS.

Surgery

Surgery in PTS is not generally recommended since the effects of surgery can be more severe than the symptoms of PTS.

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How common is Hereditary Spherocytosis (HS)?

HS is relatively common – around 1 person in every 5000 people has HS (around 800 people in Melbourne; population 4 million).

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in 5000 people has HS

Which is the same as

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people in Melbourne

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population of Melbourne*


What does having HS mean?

There are three main common problems associated with having HS:

01.

Anaemia

– this occurs because the red cells break down more quickly

02.

Jaundice

– when red cells break down they release a pigment called bilirubin which appears as a yellow colour in the skin and the eyes. Over a long period of time, the problem of jaundice can be associated with gall stones.

03.

Increase in the size of the spleen

– this is the site of the red cells breaking down. The spleen is a blood filter and some of the red cells can get caught up in the spleen

There is another uncommon potential problem for people who have Hereditary Spherocytosis associated with a viral infection called “Slapped cheek”. Slapped cheek is caused by a virus called Parvovirus which can infect bone marrow cells and put the red cell producing cells “to sleep”. Because patients with HS need the bone marrow to be rapidly replacing the fragile red cells, this infection can cause a severe anaemia; patients can become very pale and sometimes even require blood transfusions. Fortunately this problem is uncommon.


Diagnosis

How is Hereditary Spherocytosis diagnosed?

HS is now diagnosed with a simple blood test. It is also important for a doctor to examine patients with HS to see if they are jaundiced or have an increase in the size of the spleen.


Treatment & Management

What do I need to do now that I (or my child) has been diagnosed with Hereditary Spherocytosis?

Most patients with HS do not need to do much about their condition at all. The bone marrow has the capacity to increase the number of red cells it produces many fold and is able to keep up replacing the fragile cells.

A few things may be helpful:

01.

Regular blood tests

– to check on the level of haemolysis

02.

Folate supplementation

An important vitamin necessary for the bone marrow to function properly is folate. Folate is found in green leafy vegetables. Most people get enough folate in their diet but getting extra folate (particularly in HS if there is significant haemolysis – red cell breakdown) is generally recommended.

03.

Ultrasounds to exclude gall stones

It may also be important to make sure children and adults are not developing gall stones – an ultrasound of the gall bladder after that age of 5 years of age every 3 – 5 years there after, is the current recommendation.

Will I (or my child) need a splenectomy?

Removing the spleen (splenectomy) has been used a lot in the past in the treatment and management of patients with HS; it stops the red cells from breaking down and solves the problems of HS.

Removing the spleen has problems however – the spleen is an important organ in the immune system and patients who do not have a spleen may be prone to getting serious infections. This risk is higher in younger children but may be less than previously expected because of newer vaccinations. It is now generally recommended to avoid splenectomy in children younger than 6 years and to ensure that children who may need a splenectomy have all the appropriate vaccinations.

Another approach for some of these young patients is to remove only a small part of the spleen – partial splenectomy. This is done in a few hospitals and there is some experience to say this may be very helpful for some patients.


Resources used to produce this information sheet.

  1. Non-pharmaceutical measures for prevention of post-thrombotic syndrome. Cochrane Database of Systematic Reviews 2006(Issue 4).
  2. Antithrombotic therapy for venous thromboembolic disease: the Seventh ACCP Conference on Antithrombotic andThrombolytic Therapy. Chest. :401S-428S, 2004;126(3 Suppl).


Further Questions?

The information presented in this fact sheet is intended as a general guide only.

Patients should seek further advice and information about Post thrombotic syndrome (PTS) and their individual condition from their treating haematologist or doctor.

1000 563 Melbourne Haematology
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