Dear Patient Reader,
While showering this morning it occurred to me that I might be boring
you to tears[not the 1st time that thought came to mind] Got to be quick
about it...so..
Item #1...2nd.side Pallidotomy vs.Deep Brain Stimulation[DBS]
PRO PALL a.First side went well
b.Know the surgeon and surgical team and trust them. Ditto
with the hospital.
c. Know the area well.My roots are here. My family,friends,
colligues,neighbors,"my"
Medical team is down the street; my neurolgist,internist
etc and THE surgeon and
hospital are 25 miles away
d.No long haul follow-ups
e.My insurance co. will cover all the cost.It's a HMO but
they had little trouble
paying for 1st side.A tribute to my Internist,Neurologist
and HMO Case Manager.
Fine advocates.
f.I have some idea of possible surgical complications and I
have some thoughts about
how to deal with some of them.Speech is a serious concern
with 2nd side Palls and
dispite my efforts to understand this complication I'm
still trying to come to grips
with it.And, of course, I have a soft voice.My plan is to
arrange for speech therapy
BEFORE and after surgery.I'm also relearning how to whistle
and will on occasion break
into song. The key word here is break.
CON PALL a.Usual and possible complications of any surgery.
b.Possible complications unique to Pall.[either side]
c.posiable complications unique to second side
Palls..especially the speech problem.
d.By doing 2nd side Pall I would be ruling myself out for
other forms of surgery such
as DBS and tissue transplantation[maybe].This is a
complicated issue.
e.It seems to reason that the Pall.surgery will, given it's
more invasive nature,
be more likely to fail the test of time then will a less
invasive surgery.
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PRO DBS a.Less invasive than Pall.and therefore would counter d. and
e.of above CON PALL.
b.DBS is reversaible.
CON DBS a.Usual and possible complications of any surgery.
b.Possible complications unique to DBS surgery.I understand
that this surgery is longer
and more complicating than Pall
c.Possibility exist for defective equipment and parts that
malfunction etc.
d.I will not be able to have another MRI or pass through
another airline security post
with out setting off alarms.
e.DBS is considered experimental in the USA and if you are not
one of the 12 [NYU was
granted FDA approval to do 12 DBSs; the only site in the USA
to be granted approval to
do DBS in"lieu of performing the second lesion".Already they
have a waiting list of 7.
FDA approval arrived last Friday.Bet the phones are lit up
Tuesday am.
f.Given the experimental nature of the surgery insurence
companys are not likely to pay.
The ballpark cost at NYU is $50,000.plus travel,hotels,etc
Follow-up is "lifetime.
g.Hospital stay is at least 7 days vs 2-3 for Palls.More time
to pick up hospital's ills.
h.Given the cost and the lack of sites we look toward
Canada,Europe and Japan.It's not
clear what their medical institutiomns/political/health care
systems are all about.
I have some close family on PEI,Canada who aren't happy with
the long wait for certain
procedures and if fee-for-service foreigners were filling the
beds.Well....
I'm sure i've missed a good deal of PROs and CONs especially with regard
to PRO DBS but I'm hoping
that you all will fill in some of the blanks.Those of you who live outside
the USA and familiar with
DBS hold some invaluable information and I [and others] would be grateful
to hear from you.Geert
from Belgium has been kind enough to share his eexperience with me.
And those of you who reside in the states but had DBS surgery in another
country could give me a
most interesting slant. Joanne and Don of Berkeley were most kind in
sharing their experience with
DBS surgery in France
I'm leaning toward doing the 2nd side Pallidotomy because it is
familiar.I would like to have more
information available although my decision will be based on what feels
right to me.
Thank you kindly for reading this posting but I must warn you there is
more serious stuff to follow.
My very best,
George Lussier [[log in to unmask]]
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