Deep brain stimulation diary: Kathy's story
Kathy was diagnosed with Parkinson's in 2001. In February 2010 she
underwent deep brain stimulation (DBS),
a form of surgery which can treat some of the symptoms of
Parkinson's.
Here, Kathy talks about the surgery, and shares her
personal experiences in an online diary.
23 February 2010
Well here I am at King's College Hospital in London awaiting my
surgery tomorrow. I am first on the list they tell
me. But as the operation takes most of the day I guess I am
the only one on the list.
Can't wait to get it all over and done with and hopefully start
to get my life back together. Having had Parkinson's for
about 13 years with severe tremor of the left side of my body, this
is really the only option left to me.
Since my neurologist first suggested I consider the possibility
of DBS surgery it has taken me almost one year of assessments to
get this far but I am sure it will be worth it in the
end.
I was officially diagnosed with Parkinson's in 2001, with a tiny
tremor in the little finger of my left hand, but I had already
shown symptoms for about 2 years earlier. Since then it progressed
into a severe tremor of the whole left side of my body and life had
become progressively more difficult.
My husband Doug and I were aware that I was now on the maximum
dose of my Parkinson's medications and things could only get
worse.
So almost without hesitation we agreed to at least explore the
possibility of surgery. The first step was a referral to a
neurologist at King's in London.
A year of assessments
I was seen at King's in August by a registrar and neurologist:
lots of questions and tests - writing, picking things up and
checking co-ordination.
It was a blow when a DAT scan result confirmed my Parkinson's
would eventually progress to the right side of my body. Symptoms on
my right side had not shown before, possibly due to the high levels
of medication I was taking they said.
However they thought I would be an ideal candidate for DBS and
explained the risks and benefits, the process and what was
involved in the operation itself.
I would need to be awake throughout the procedure, so that they
could assess when the tremor stopped. This would mean only having a
local anaesthetic. This was a lot to absorb and the neurologist
asked again if I still wished to pursue this.
Of course I answered yes, especially now I knew my right side
symptoms would eventually catch up. What other option did I
have?
Many other people had undergone this type of operation while
awake, and were still around to tell the tale, so why should I be
any different to them? This was looking like the only way I might
at least get some of my life back.
Strange though it may seem, I was now beginning to feel quite
excited about the prospect of being able to once again carry out
even just the simple tasks like doing up buttons and
zips.
No hospital bed available
The next step was to be a 2-day hospital visit
in September for which I had to come off all my Parkinson's
medication, so the professionals could see how bad things could
really get. From this they would judge if I could continue along
this route or not.
Having come off my meds 2 days before admission I was in an
almost uncontrollable state. Then on the day - I was
devastated to learn from the hospital there was NO BED available. I
immediately went back on medication, however it took another 2 days
to get back to my 'normal'.
Fortunately a a bed was available for my rescheduled appointment
in October. The DBS specialist nurse filmed me with her video
camera as I carried out various tasks - or tried to.
More tests followed, and I was given medication to see how long
it would take to bring my tremor under control. This it seemed
would be the deciding factor. After my film shoot and the tests
were completed I re-started my Parkinson's meds again and waited
for Doug to come and get me for the long drive home to the South
Coast.
Meeting the neuropsychiatrist
An appointment to see a neuro-psychiatrist was the last part of
the puzzle. 3 hours of memory, recognition, word
association tests and building blocks into patterns would determine
if I was mentally able to go through with this. Being awake
while the surgeons operate on your head is something that wouldn't
be relished or tolerated by everyone.
All the specialists' reports and my video went before a panel
who would make the final decision on whether I was suitable to have
this operation.
Finally, at the end of November 2009 I received a letter to say
that I was suitable for DBS and that the operation could go
ahead.
... and finally the surgeon
My appointment to meet my surgeon in December was just prior to
my husband going into hospital for a triple bypass so the timing
could not have been worse.
Back at King's again we found ourselves speaking to the man who
would eventually be making holes in my head. The whole procedure
was explained through in great detail with the risks and possible
side effects of this type of operation.
He told me about the different types of operation that I could
have and we finally settled - not lightly - on the most major
of the 3 options.
This would mean inserting probes into both sides of my brain.
Even though the right side was as yet unaffected, the probes and
wires would already be in place to turn on when needed in the
future.
Doug was to go into hospital for his heart surgery in 2
weeks time so we agreed that my operation would be delayed
until late February 2010.
Final preparations
2 weeks before my surgery I met the DBS specialist nurse for
various tests incuding blood tests and an ECG. If any of the test
results were not acceptable I would hear from them before my I was
due to come in.
As always there were also lots of forms to complete - and this
with my very long list of questions meant we were there for most of
the day.
Find out more about surgery for Parkinson's
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