Hello, again
I suffered for 20 days with severe whole body tremors right
after DBS/STN surgery.
There was no known cause for these tremors. We checked with
everyone we knew
and ran up against a wall. We then asked Jim Maurer to try
finding out what the cause
could possibly be. He contacted people in the national &
international medical community,
as well as Medtronic and no one had heard of such a
phenomenon in connection with STN
These were tremors of such magnitude that my body was like a
rock and I was constantly
looking for release of the tension in my body - my arms and
legs felt like electricity was
being shot through them. I was in constant motion looking
for release-that only changing
my position afforded me.. I spent a great deal of time
crawling on the floor, doing yoga
like stretches with an army of pillows arranged in varying
positions to giving me a few
minutes of comfort. Sinemet did not have any affect, though
I continued taking my regular
dose. I did not sleep except when given Ativan, and then
only maximum of 2 hours at a time.
I was very hot all the time (had to have a fan blowing on
me) and I needed a wheel chair to
even go to the bathroom. Carol Walton, Exec. Director of
the Parkinson Alliance,
whose office is at my house - moved in and handled my care
for the duration. She organized
& coordinated 24 hrs care, scheduled my meds and positioned
herself to be on hand, day and
night. Two weeks after surgery, we went to NY to have the
staples removed and to have the
stimulator turned on. Our arrival at Dr. Kelly's office was
quite a show: I proceeded to get on
the floor and take my shirt off (too hot) and I am sure
that no one had seen anything like my
performance. Although I knew that I was acting strangely, I
did not care, I sought release
from the tremendous inner tension. I performed the same
act in the offices of Drs. Baric
and Sterio where the adjustments take place. Not until our
4th visit was I significantly better,
the tremors having finally stopped so I was able to get on
with the just mundane act of
recovering from STN.
Of course, I was constantly thinking about what could have
caused the tremors? Since no one
else who had STN had such a response, I looked for
differences:
1. I had two brain surgeries within a short period of
time --- oh, yes, a small tumor was found
on my pre-op MRI. It had nothing to do with Parkinson's .
Dr. Kelly felt that it was best to
remove it, because once I had the stimulator implanted,
monitoring the tumor would be difficult
since an MRI could not be used. On 12/12, I had the tumor
removed from my left occipital lobe.
It was small and benign. Dr. Kelly said that many people
live their lives with tumor(s) in their
brain - they just don't know about it--no one has routine
MRIs. Since, this was also a
steriotactic surgery, the burr holes could be reused for the
STN surgery - a small inducement.
2. I was given phenytoin (Dilantin), routinely given with
brain surgery, to make sure that
the patient does not have a seizure. Whereas, I was only
taking this med for 14 days,
I stopped taking it without tapering off and I HAD THOUGHT
THAT THIS COULD HAVE
BEEN THE CAUSE of the full body tremors. When I mentioned
this to Dr. Baric,
the neurophysiologist, he said that it was the right causal
relationship but he felt that
Xanax was the culprit and that my tremors looked exactly
like the typical DTs
addicts experience when withdrawing .
The reason for my taking 0.25 mg Xanax nightly was to
help me sleep. I was diagnosed having
PD in 1980. And after a few years of taking
dyphenhydramine, Dr. Duvoisin prescribed a
combination of Xanax and Amitriptyline 25 mg to help me
sleep. I added Melatonin, 5 mg. about
8 years ago and have had 6-7 hrs of sleep nightly most of
the time.
Here come the lessons we, PWPs and Caregivers MUST learn:
1. we must provide lists of our meds to all doctors, nurses,
and hospital employees - I did!
2. everyone is suspect who comes into contact with the
patient . We need to be paranoid!!
I was almost wheeled into a test, - the wrong one! Marty
overheard someone on the
surgical prep team (the 1st surgery) ask, 'which side is the
tumor located?' and
someone answered that she did not know. Fortunately, Dr.
Kelly was arriving at that
moment and assured Marty that he knew the answer.
3. somehow we, the patients, lose identity - no one
listens to our questions, or directions .
Everyone talks about us in the 3rd person. Very annoying!
3. in addition to the list of meds to be provided to all
person's involved in your care,
you should know what each med does and whether it is
the best choice for you?
Xanax is not a sleeping aid; it is used in the general
treatment of anxiety and panic
attacks, and as an adjunctive therapy for depression.
Regular use is discouraged.
When discontinuing chronic use, it is recommended that
the dose not be decreased
by more than 0.5 mg every three days. A quicker
withdrawal could induce serious
side effects like seizure. Additionally, taking
benzodiazepines may decrease the
effectiveness of Levodopa. Each neuro I visited
throughout all the years, renewed
my prescription - no discussion/no questions. And I,
was too lazy to check out my
meds though I had the opportunity.
After the procedure, I was not given my nightly dose of
.25mg. The patient needs to
be easily aroused by doctors to check that nothing has gone
wrong and that the patient
is alert. By the second day after surgery, I was having
serious whole body tremors.
I guess I am very sensitive to changes in meds, because the
suggestion not to
decrease the dose more than 0.5 mg every three days is not
applicable, since
the most I ever took was 0.25. Go, figure.
Please heed my warning, I lost 3 weeks of healthy,
productive living. It was hell to go through.
I have a new found sympathy for addicts kicking their habit.
Ask questions, be responsible.
Margaret
The Parkinson Alliance grows your donation
........twice the research for your dollar!
The Parkinson Alliance
211 College Rd E. - 3rd Fl
Princeton, NJ 08540
ph 800.579-8440
fax 609-688--0875
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www.parkinsonalliance.net
