1980's brain surgery may have exposed 50 patients to Creutzfeldt-Jakob Disease

May 31 2005

It has now been revealed that as many as 50 patients may have been exposed to Creutzfeldt-Jakob Disease (CJD) following brain surgery during the 1980s.

Attempts by doctors in Edinburgh to track down the former patients have been hampered because, according to NHS Lothian, the medical records of many of the people at risk have been destroyed.

During a ten-year period from 1982 to 1992, the affected patients underwent a surgical procedure that was subsequently linked with the virus, the human equivalent of BSE or Mad Cow Disease. Doctors say up to five patients a year could have undergone the grafts within that period.

Most of the operations would apparently have taken place at the Western General Hospital where the neurosurgery department is still based.

During the neurosurgery a material, manufactured from human cadavers, was used as a "patch" for the thick outer layer of the brain, the dura. The material, Lyodura was withdrawn from the market nine years ago following links with CJD.

The current scare follows the inquest into the death of a 34-year-old man, Simon Stratford, in England who contracted the virus from a contaminated Lyodura graft.

In an effort to reassure the public, officials at NHS Lothian insisted yesterday there was no need for concern as the risks of anyone being affected were small. They say they are awaiting advice from the Department of Health's CJD Incidents Panel about notifying patients who may have received the grafts.

Dr Charles Swainson, medical director of NHS Lothian, says the CJD surveillance unit in Edinburgh is monitoring the situation, and providing evidence to the Coroner, but many patients who may have been affected will have had their records destroyed in line with national policy on the retention and destruction of records.

According to a leading scientist from the surveillance unit the risk of any patient having contracted the disease was "very low".

Professor Robert Will, consultant neurologist at the Western General Hospital and the founder of the surveillance unit, gave evidence at the inquest into Mr Stratford's death.

He says Lyodura has been used in thousands of operations worldwide and there have only been 168 recorded cases of CJD, mostly in Japan, and only six or seven in the UK.

However Frances Hall, trustee of the Human BSE Foundation, a support group for families and victims of the virus, says tracing the former patients was vital as one of the biggest dangers is that these people may have been transmitting it by donating blood or organs and unknowingly passing on the virus.

Hall says because the gestation period of the virus is so long by the time it shows itself it's too late and the damage is done.