Marjorie Moorfield wrote:
> Could all of you who have had surgery this year report
> to us , your electronic family, your condition at this time.
I had a pallidotomy 9 weeks ago and have experienced
the following improvements.
1. left side dyskenisia has been reduced to a short
burst at 'kick-in' (as compared to an all day
endurance test pre-operatively).
2. My physical abilities during my 'offs' are considerably
improved both subjectively and in the test results.
3. After several weeks of experimentation I have finally
found a meds combination that allows me to achieve
14 - 15 'On' hours in 18, with only minimal right sided
dyskinesia. To do this I have had to stop using
Sinemet CR. My successful regime is:
Eldepryl 1x 1times daily (taken AM)
Permax 250mcg 1x 3 times daily (taken 6am;
12 noon;6pm)
Sinemet100/25 1 1/2x6 times daily (taken at
6am;9am;12noon;3pm;6pm;9pm).
I find that there is little or no leeway as to the timing of
the sinemet. Taking them early can trigger right sided
dyskinesia, taking them late can result in a prolonged
'off' period.
On the negative side:
1. My ability to turn over in bed, whilst objectively showing
an improvement, feels as bad as it ever did.
2. My sleeping patterns have remained poor, with 1- 5
awake periods each night. Insomnia is also a problem,
and I am often awake from 4am onwards. These
patterns are unchanged from my pre-operative experience.
3. The operation itself proved to be more traumatic than I had
anticipated. This was because I had to have it twice in two
weeks. On the 1st occasion the surgeon aborted the
procedure as he was unable to get the right response to
the stimulations within 4mm of the anticipated site. A
2nd MRI, confirmed that his calculations were right but my
brain was 'different' (I would just mention here that I have
already heard every possible comment). A week after the
1st attempt we repeated the process, this time succesfully.
Summary
The improvement in my quality of life is profound. Even when I was
experiencing the frustrations associated with adjusting my meds, my
overall condition was a great improvement on my pre-op situation. At
present right sided dyskinesia is only a very minor problem. Should it
become worse I would certainly consider another pallidotomy.
Dennis.
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Dennis Greene 47/10
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