Deborah -- I am absolutely amazed that you haven't gotten more feedback to
this extraordinary story. It seems that each of us are so fixated on our own
personal PD stories that we cannot reach out in sympathy or empathy to
someone who has suffered beyond the pale. My heart goes out to you, and I am
inspired by your courage. I remember you writing from the hospital at one
time, saying that you had a staph infection after the DBS surgery. You
deserve to prevail. God bless you and keep you.
Ann

-----Original Message-----
From: Deborah Henderson-Setzer <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Saturday, March 02, 2002 11:04 AM
Subject: Re: effects of pd


Hi Aggie,

  I am Deborah from Charlotte... aka... Tenacity.  I am one of the people
whose outcome from the DBS surgery is about as bad as they can get and even
with that... I am planning and have talked to the doctor and Will have the
surgery again as soon as I am well enough.  Frankly speaking, it worked!

  I had the surgery, STN DBS Unilateral, 12-21-01.  12-28-01, I started
having headaches.  1-6-02 was rushed to the hospital, given Demerol,
dilaudid, ativan, toradol and morphine before the headache subsided... My
husband signed his life away and I had a MRI.... NOT RECOMMENDED by
Medtronic’s.  Test results showed that I had developed an infection in the
chest, neck and brain.  At 1:30 in the morning, the DBS was removed in
emergency brain surgery... My brain was washed to remove the puss and
infection.  I spent the next 11 days in the hospital.  Blood cultures came
back the next day showing staph.. fortunately, the non-resistant kind to
antibiotics.  It was treatable.

  I had a seizure while there after the removal that lasted for over 3.5
hours.  Collapsed veins galore.  During the seizure, a doctor missed doing a
central line necessitating X-rays to determine if my lung had been
punctured, then a cut down to the groin was done so that a second IV could
be started so that more tests could be conducted.

  When I was released, I was on 44 pills a day + IV Vancomycian via a pic
line located on my upper left, inner arm, two times a day.  I learned to
give these to myself and to flush the line with saline and then complete it
with hep-loc to keep the line from clogging.  The IV time lasted 1.5 hours
each.  Home health came out once a week to deliver my IV meds and do blood
work.  The correct blood work was not done and I developed drug induced
hepatitis and developed a resistance to the medication.  Multiple daily
seizures continued until January 26, my 40th birthday, when the last of them
ended with 2 at the dinner table at a restaurant to celebrate my birthday.

   After 9 days of fever, I developed a rash every time I gave myself the
antibiotic.  This necessitated me having to have antidote therapy in the
Emergency Room and a change in IV medication.  I reacted to that medication
too.  On Feb. 4, 2002, my temperature reached 104.8 and I was admitted to
the hospital again... locally.... (Long story there... was sent away from
the hospital that did my surgery and told to use benadryl and a topical
ointment earlier that morning).... The next day I was given my last rites
and transferred to ICU where I would spend the next 8 days.  It was not
known until that Friday if I had developed Stevens Johnson Syndrome as my
rash developed into boils and my eyes swole shut.  I did not eat, because of
the severity of the whelps in my throat for 5 days.  The bottoms of my feet,
the palms of my hands and every part of my body, including genitalia, was
covered in sores.  They did not itch… they burned as if I had laid down in a
bed of red ants or was being stung all over by a hive of bees and hornets.
All of the skin on my body, 3 layers deep peeled away.  That is when the
itching began. (My hands and feet are still in the process of peeling). By
the end of the hospital stay, I was collapsing a vein every 6 hours
necessitating an IV in the main artery in the neck... which also failed
after 24 hours, though I can't remember exactly why they removed it.

  It was also not known if the staph infection in my brain had ended...
blood tests take 3 days to culture and MRI showed infection... the doctors
had to make a decision... they choose steroids... 780 mg a day... If you
take steroids while an infection is present, it can intensify the infection.
It was a crap shoot as to what to do... I could die from either.  They did
not think that I would live if they did not take care of the reaction to
Dilantin that I was having.  Yes, it was a reaction to ONE of the
anti-seizure medications that they had me on that did it.  Dilantin is a
medication that binds with the fat cells in your body so there is no
antidote other than time… the other medications that I was on also were of
this type.  Steroids are shown to help speed up this process, though not
without a cost.

  Because of the steroids, I developed diabetes.  I have to date, not broken
a fever but 3 times in over 6 weeks.  I have impaired liver functions,
pancreatic functions, and my immune system is compromised.  I am not allowed
to leave my home or have anyone enter it because of the steroids knocking
out the immune system.

  My MSA symptoms have returned, I have gone from 130 to 160 pounds, I
currently also have an ear infection, sinus infection and have developed a
lump in my armpit.  My body is swollen.  The doctors cannot at this point in
time tell me when I will be well again.  They said someone with multiple
systems failure due to the medications to treat the staph infection and
having multiple systems atrophy... they just don't know.

   With all of this.... being the person that you don't hear their side
of.... quality of life is so vitally important.  The surgery worked... I had
no pain... I moved... I had hope for the future... I had reduced my meds...
I talked with the doctor yesterday that did the original surgery... and he
agreed... once I am physically able.... I will have the DBS, bilateral this
time, again.

    If you want to know more about how life was before the surgery, you can
email me and I will tell you more.  Please be patient though as I don’t
spend as much time on the internet as I used to… still physically not up to
it and am slow to respond to emails these days.

   Photos of my surgery can be found at
http://community.webshsots.com/user/tenacitywins

   There IS a real risk involved with this surgery but to me, even having
been through what I have in the past two months, still feel that the benefit
that I gained during the 2 short weeks with the DBS present IS worth risking
and going through again.

   Hey, I’ll join everyone in the Superdome for a party when the cure is
found!  Hope gives us reason along with our faith to keep on being… support
from one another gets us through each up and down…. Knowledge gives us
choices…. And only we can decide on an individual basis what IS and IS NOT
worth it.

   My dream, my hope, is to get well enough to be able to go around the
nation speaking and educating people about this disease… I want to play an
active part in finding a cure… I want to continue to help and give and help
others find strength where they thought there was none.  I want to …….
Live….. and know that future generations will never have to go through what
we have and never have to make the choices we have had to make…. I want this
disease to be a part of the history books that in time all will have no
recall of what it was really like.

  Sorry the post was so long, I have been wanting to do this for some time
now.  Aggie, thanks for the nudge for the other side of the story.

Deborah
But for the Grace of God, Go I!


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