In 2001, T.B. Babel, P.C. Warnke and C.B. Ostertag of Freiberg, Germany decided that too many people had been operated on for Tourette syndrome without any real study done into the effects. So they took a group of 17 patients, operated on between 1970 and 1998, and ran tests on their results.
The doctors used a 5 point tic severity scale (TSRS) which I
can only assume is different to the well known Yale Global Tic Severity Scale (YGTSS).
They used records of their health before the operation to their own testing of
after the operation.
It was a funny study to do, because some patients received a
dividing of the motor section of the brain by scalpel incision, some had
electrodes burning a track through a completely different area and there were
many minor cuts and slicings which meant that no two people had exactly the same
thing done to them!
Despite that, everyone scored better on their tic test than
they had before the operation. All of them had marked improvements in their motor
tics. Most of them had improvements in vocal tics. One person even claimed
that sensory tics had been cured. The effects, it seemed, were permanent
although they did very slightly decrease over time.
Seems quite good doesn't it? The patients were under a
mild anesthetic, it only took a few hours, and was probably the simplest brain
surgery that can be done on someone.
Slight problem:
All of the patients went slightly insane. Some started to hallucinate,
many became paranoid, a few lost their memories, all were physically very ill,
and one died from infection.
So it's not really the best idea, is it? But until this
study was done, people thought that operating on Tourette's was a really good
last resort treatment. It wasn't until the data were correlated that it
was found to be so dangerous!
This is why anecdotal evidence is nice, but serious controlled studies need to be done before something is accepted as fact.
there is a very small number of people studying Tourette syndrome in any serious
way, so official developments in treatment are slow. This is where the
World Wide Web is such a great tool. People can talk about their
experiences with those on the other side of the planet.
So I encourage you to share your experiences of Tourette's either with this site through the "email me" link, or with others. As Tourette's generally affects young children, finding people who can share their experiences in everyday language is quite hard. For years Doctors have been learning from me, and a lot of that knowledge comes from you.