Patient B's experience of deep brain stimulation
Patient B tells us about their experience of deep brain stimulation, a form of surgery for
Parkinson's.
The person's name has been witheld to protect
confidentiality.
Risks
"The surgeon explained the
risks to me – a stroke resulting from excessive bleeding in the
brain while the probes were being installed, developing epileptic
fits, and the possibility of developing meningitis.
"He put all these risks at 2%.
"I went to a large hospital which offers this treatment. They
conduct 3 operations. The first, under anaesthetic, is to bore a
hole in the skull and be fitted with a small steel plate.
"Brain scans check the 3D measurements, to check where the
probes would best be located.
"The second, which took about 6 hours and is the most hazardous,
installs the probes in their optimum position.
"In my case, this stage resulted in some internal bleeding,
although it was completed successfully a few weeks later, leaving
only the third stage – connecting up the wire.
"The early benefit was freedom from the dreaded dyskinesias.
These had dogged me for a long time and had resulted in a very sore
neck. In turn, this had resulted in a trapped nerve affecting
my right arm, which was partially paralysed.
"I was now completely free of the pain and endless bouts of
involuntary movement."
Patient B's wife provides an update
"After the early euphoria of the operation, we now realise that
Patient B is one of the 3 to 5% of people for whom the operation is
not totally successful.
"He was in hospital for 10 weeks instead of 3. Iin that time his
speech deteriorated, as did his bladder control.
"There was an increase in drooling and in the phenomenon of
freezing.
It turns out that he had a stroke during the second part of the
operation.
"He still needs a 24-hour apomorphine pump, Sinemet to start the
day, Amantadine later on and sleeping pills at night.
"20 months after leaving hospital, he needs someone with him
virtually all the time as he cannot do up buttons and sometimes
freezes or falls.
"His speech and mobility are poor and he has had to stop
driving."
Update from Patient B's surgeon
"We have since discovered that dementia has set in. This may be
due to Parkinson's, although he definitely didn't have it before
the operation.
"Patient B is now very immobilised and goes into respite care
every 3 weeks for about 10 days or so.
"The response to deep brain stimulation and medication was lost
because of Parkinson's progression rather than a direct result of
surgery."
More surgery stories
You can read more on surgery for Parkinson's in our Surgery and Parkinson's booklet
The main forms of surgery for Parkinson's
Return to the surgical treatments of
Parkinson's main page
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