Dear Craig,
I'll be pleased to help in any way I can. What I have to say is drawn
from my experience only. I've discovered that there are dozens of variables
that may effect the outcome of a Pallidotomy and it's "staying power".
Yes, I had both my Pallidotomies done at MGH in Boston by the good
doctor G.Rees Cosgrove. My right brain was done in AUG '95 and while not a
smashing success it did relieve me of the freezing episodes and the
dyskinesia from both my legs which alone was worth the price. However I
knew within 48 hours that it would provide only minimal relief for many of
my other symptoms. Meanwhile my unattended side continued to deteriorate
and I finally convinced my insurance company to pay and Dr. Cosgrove to
operate. None of them seemed to be thrilled with the idea of doing my left
brain although they did relent and the second side was done in Sept '96.
The outcome was very impressive as I knew it would be. I had spent the
intervening 13 months working on my physical and emotional strength and in
refining my mental attitude toward the surgery. I was very positive. I knew
it would work.My left side [right brain] is still a problem but the
deficits there are far outweighted by the improvement on my right side
[left brain] and it has exhibited an excellent staying power as has my
other side . It was GOODBY right side resting
tremor[90%],rigidity[90%],postural instability [80%], bradykinesia [90%],
excessive sweating [100%]. The dyskinesias and the freezing episodes were a
thing of the past following the first surgery. HELLO walking in snow
storms!!
I don't mean to say that everything is wonderful. I still have
significant neuro problems and I'm still on meds but things are much
improved. MGH is very pleased with my progress. One of the team's
Neurologists who initially was not supportive of 2nd side surgery said to
me that she would have to reconsider her general opposition to 2nd siders.
I too experienced conflicting opinions from MGH staff but I welcomed the
differing opinions because it indicated their respect for my decision
making skills and really left the decision to me.
I can feel considerable empathy with your mon's dilemma. One of the
option I had to consider was to redo the first side [right brain]. That
option is now off the table due to concerns about my speech. Leave well
enough alone may reflect Dr. Cosgrove philosophy.
You inquired about speech and .......er .......err.......what was it?
AH,... memory. Memory first before I forget. Actually memory has not been a
problem, at least not anymore than it always has been. I do believe I have
a touch of that current favorite Attension Deficit Disorder [ADD]. I've
recently started on a course of Ritalin hoping to ease the excessive
fatigue I was feeling. Not only has it reduced my fatigue but it has also
has improved my memory to some extent [As well as a cluster of minor
symptoms] Neither of the two other 2nd sider patients I spoke with prior to
my surgery complained of memory problems and they were 60+ and 74ish One of
them did report some speech problems but he felt it would improve with
practice. "A small price to pay for a successful surgery".
On to speech. My speech has been a problem for me all my life. From the
very anxious young child to the fumble mouth teenager to the reticent young
adult to the older, [prehaps] wiser, more reflective,listening clinical
social worker/adult. And yes the second surgery made it worse but it is far
outweighted by the gains.I occassionally see a very good speech therapist
and practice endlessly.It was through a strange happening {that will be
shared with other readers as a part of my series on useless info-but you
may have a sneak preview by contacting me at home] that I have seen some
real progress. My volumn is improving and my diction is not far behind.
Redoing the first side is not as easy as it may appear. The real
deciding factor is, as it is in the real estate business,
location,location, location. They cannot,I believe, enlarge a poorly placed
lesion. And finally, yes, Dr. Cosgrove has redone a handful of 1st siders
including his very first patient, Richard Weeden, who received his initial
surgery from Dr.Laitinen in Sweden with DR.Cosgrove observing. That
surgery's benefits lasted for all of 2-3days but a few months later Dr.
Cosgrove successfully redid the surgery at the MGH with Dr. Laitinen
observing. Mr.Weeden story can be found on the Internet at
http://neurosurgery.mgh.harvard.edu/pdpallid.htm
Craig, I had my second surgery videotaped professionally. I have
not finished editing it. It is still hard for me to watch especially my
presurgery self but on the plus side it does graphically show me at verious
stages pre #1, pre #2 etc. You should feel free to contact me if you and
your mom [Others? ] might be interested in seeing the tape. And I would be
happy to talk with your mom on the phone or in person if she lives
somewhere near my home in Acton, Mass
My best to you ,your mom and other family nembers.
george 2/20/'97 Very late morning
[log in to unmask]
AMAZING GRACE
Amazing grace, how sweet the sound
That saved a wretch like me
I once was lost, but now I'm found
Was blind, but now I see
-----------------------------------
