Toxic shock syndrome: the follow-up

Written by Dr. Colin Michie MA FRCPCH FLS

Toxic shock syndrome, TSS, is a serious illness: patients usually require a period of care on an intensive care unit and following this a prolonged recuperation. There are no accurate figures available for survival that can be used, as intensive care methods steadily improve. Mortality figures for TSS in two series published after 2000 are 1.8 % and 3%; one research group has reported higher rates of mortality in non-menstrual TSS cases.

Recovery after TSS is a challenging time for the sufferer and family; it is not particularly different to that in patients with septic shock or septicaemia. Most patients recover completely and without any significant long-term handicap. The most important observation is that TSS can recur in the same individual. Rates of recurrence vary from 5-40%, depending on the patient series.

It is wise for patients to take a number of steps in the light of this information. Firstly, ensure an appropriate recovery time. Admission to hospital with a life-threatening or critical illness is often traumatic psychologically. Patients frequently describe being easily fatigued with unusual muscle weakness for many months afterwards. Problems with sleep or memory loss, or post traumatic stress disorder have been found in some. Secondly avoid any situation that may precipitate another episode of TSS. For instance in women, irrespective of the cause of the TSS it would be wise to avoid tampon use and any other internal (vaginally worn) menstrual or contraceptive devices. Thirdly make any surgeons, medics, dentists or other clinical staff involved in the care of the patient aware of the history of TSS: precautions may be required prior to further procedures. Finally it may be helpful to ensure those around the patient are aware of the early signs of TSS. Should there be any suspicion that the illness is developing again they may assist with a rapid referral to a medical centre where the patient’s blood pressure and other vital signs can be checked. Early or pre-emptive responses are life-saving.

Retrospective studies have identified a number of individuals that led normal lives 80 years after this illness. TSS does not affect fertility, or influence the risk of malignancy. However long-term follow-up of TSS survivors has identified a number of problems that should be described as some survivors may find these useful. If in the acute illness parts of the patient’s body become damaged by low blood pressure, long-term difficulties may develop later. For instance gangrene of digits and limbs early in TSS may lead to amputation; kidney damage might precipitate renal failure. However if patients are treated early and aggressively these complications are rare.

Less serious complications have been observed and described by TSS survivors. Most patients describe losing hair over the first six months of recovery. This is a reversible condition – hair re-grows well! Some will also notice changes such as marks or ridges in their fingernailsLink and toenails – these too resolve with time (although nails may be lost for a short while). A number of patients report peeling of the skin, and then subsequent repeeling for several years after their illness. A few report developing allergic conditions such as eczema or hayfever. These allergic disorders tend to be short-lived and do not persist more than a few years in most patients.

Doctors following children with TSS have observed that a number developed changes in the arteries around their hearts. This problem is also seen in children suffering another condition, Kawasaki disease. In all the reported cases the dilated coronary arteries have resolved. However because of this observation and the fact that TSS is rare, it might be wise to have a cardiologist check the coronary arteries of all TSS sufferers to ensure they are of normal size. This check involves a harmless ultrasound investigation by an experienced cardiologist.