Well, you can call me brave or stupid, but I wrote back to my own
neurosurgeon. This is what I wrote. I don't expect a response.
Jenn
Dear Dr. Parrent,

I do NOT grant permission for this letter, or any portion of it to be
placed in my medical file at the London Health Sciences Centre, or for it
to be read by Dr. M.J. Strong, Breeda O
'Farrel, Nurse practitioner, or Karen Findlater, physical therapitst.

 I am certain that it is hard for you, as a physician, to understand my
entire situation, and it was difficult for me to express things to you
over the telephone, or even when I saw you during our extremely brief
meeting on January 25, 2002. I thought it best that I write you a letter,
as this is my best medium for statement. Perhaps this is why I am an
English Major at University.

While I know this will do nothing to speed up the date of my Intrathecal
Baclofen Pump placement, I thought it might help you to better understand
my life as a patient, and just a human being in general. I also thought it
might be helpful for you to be informed as to the history of my pain, and
what I have already done to try and control it. Doctor Michael Strong does
not know some of these details. You are going to have to forgive me, as
this letter will be long, but I feel that if I am going to allow you to be
my treating physician, there are things that you must understand. Since I
have not had a scheduled clinic appointment with you, it will have to be
through this medium.

I began to have pain and spasms in my legs when I was approximately
thirteen years old. The Paediatric Orthopaedic Specialist, Dr. Timothy
Carey, performed x-rays, and sent me for a battery of tests, including a
bone scan. All of the tests came up negative. He was mystified, and after
several years, sent me to see Dr. Gail Delaney, the physiatrist who still
follows me to this day. Dr. Delaney recommended that I go from walking
independently to using crutches. She eventually prescribed first a manual,
and then a power wheelchair for everyday mobility. At the age of 17, I
began to have unexplained movements, which we thought was seizures. I was
sent to a neurologist (who shall remain nameless). All the E.M.G. and
sematosensory evoked potentials tests came up negative. I got told that my
symptoms were psychological, and that I should seek the help of a
psychiatrist. I went once, but they stated that I did not require their
services. I never returned to that neurologist. Dr. Delaney has treated me
ever since with things such as physical therapy, occupational therapy,
acupuncture, trigger point injections. She has given me oral medications
such as Ativan, Baclofen, Clonazepam, Diazepam and Flexeril.

I have tried Botox injections to adductors and hamstrings, but as I write
this, the physician in Ottawa who was giving the injections has refused
them, saying that I DO NOT HAVE ENOUGH TONE. YET ANOTHER PHYSICIAN SAYS I
HAVE TOO MUCH SPASTICITY TO BENEFIT FROM BOTOX INJECTIONS.


In 1999-2000, I began researching treatments for cerebral palsy on the
Internet. I discovered information regarding selective dorsal rhizotomy
and Intrathecal Baclofen Infusion. I raised enough money to travel to
Saint Louis to meet with Dr. T.S. Park. He was,and still remains, the only
surgeon to perform the operation  on adults. I wrote all over the country
to see if I could find a paediatric surgeon in Canada to perform my
surgery, and Dr. Terry Myles answered my letter within two days. The
surgery was done on May 2, 2000. I thought it had been a success, but as I
continued the rehabilitation process, I noticed my tone returning. Knowing
that this was supposed to be IMPOSSIBLE after selective dorsal rhizotomy,
and that the procedure COULD NOT be repeated, I wrote to Dr. Leland
Albright in Pittsburgh, and explained my symptoms of pain, fatigue, my
body always being in some type of motion, etc. It was Dr. Albright who
first suggested the diagnosis of both spastic and dystonic cerebral palsy
to me. He explained that sometimes the dystonia did not become evident
until after selective dorsal rhizotomy.

Dr. Albright has been a wonderful friend to me. He has shared full-length
articles that he has written in medical journal articles with me. These
have been on the topics of spasticity, dystonia, and Intrathecal Baclofen.
He has accepted my e-mails day and night as I have been denied Botox
injections. He has heard the anguish in my written words as I told him one
anti-spasmodic after another no longer worked. He was as upset as I am
when I had to inform him that I needed to take 5 mg of Morphine every one
and a half hours, to control pain, in addition to my antispasmodics.

He was also thrilled when he heard that the Intrathecal Baclofen trial
worked for me. He thought he was only helping by contacting you to ask
about an earlier surgery date. I never gave him your full name. He took
the time to look up your e-mail address by himself, because he cares about
me. He is concerned that I will not complete my semester because I am
constantly sleeping due to medication I must take to control pain. Other
times, I lie awake, wondering if I will ever sleep, or if my body will
ever cease moving.

There are only two occasions in my life when I could ever say I was pain
free, or free of spasms. The first was immediately after my rhizotomy, and
the second was when I went through my trial for Intrathecal Baclofen.
Perhaps it is not worth telling you this, because I know I must remain on
a waiting list, but I am twenty-three years old, and just want to say that
I am able to spend some part of my day pain free. I want to hold down a
job someday, and have a family, but as of this moment, these seem
impossible dreams (even though Dr. Albright has told me that at least in
his hospital
You had asked me during our telephone conversation this evening why it was
that I felt like a number. The truth be told, I feel like a number, and
even a thing, rather than a person. I am, in essence, being given a
number, being put on a waiting list, no matter how desperate or in how
much pain I may be in, there is always someone who is more desperate. They
must come before me. I also feel like a number, because though I gave Dr.
Strong many questions I wanted answered on my Intrathecal Trial day,
almost none of the questions were answered, as he was busy with other
patients, and you were in the Operating Room, through no fault of your
own, as others needed your attention.

Please do not get me wrong. I feel extremely fortunate to be one of the
few patients chosen to receive an Intrathecal Baclofen Pump this year. I
know that as a physician, you are doing your best to treat your patients,
as they need to be treated. However, now that I realize how much
Intrathecal Baclofen will benefit me, it hurts me more than you will ever
know because I may have to wait four months to receive it. This is
compounded even more since I have worked so hard over the past two weeks
to gain insurance approval for the drug itself.

I have also done as everyone on the Movement Disorders team has asked, and
keep returning to the hospital to have post-intrathecal injection videos
made, even though, these too, increase my pain. I have no idea what Dr.
Albright wrote in his letter to you, but he has been there with me through
everything. I will send you what I wrote to him, and then his response
back to me, so that perhaps you can see things from my perspective:



To: Albright, Leland

Subject: I need to vent-- re: ITB, PAIN, ETC.

Dear Dr. Albright,

Sorry, but I need to vent. I sent what I considered was a nice, rather
diplomatic e-mail to the neurologist who did my intrathecal baclofen trial
today, asking, (what I thought was politely), if he could speak with the
neurosurgeon to see if my surgery might be done sometime this month, while
I am still at home. This would mean that I don't have to live the rest of
my semester in pain, half doped up on morphine, clonazepam, and
oxazazepam. I got a very icy reply back saying that he would not "harass
Dr. Parrent" (neurosurgeon), regarding my pump placement. I was basically
told not to e-mail the neurologist anymore. The reason given was that if
all of his patients e-mailed him as much as I did, he would not get any
work done. From my point of view, I am just asking questions that SHOULD
HAVE BEEN ANSWERED AND WERE NOT DUE TO THE PHYSICIANS
Dr. Albright

Jenn,

I sent an e-mail to Dr. Parrent asking him if there was any way to move up
your surgery date.

Dr. A

I am not sending you this because I want you to send me to a social
worker, psychologist, or other mental health professional. I have been
[Adown all these routes and find no one really understands what it is like
to be in pain. I also don
You had asked how much longer I will be in London. As it stands now,
probably until February 26th. I have several more videotaping sessions at
University Hospital, an E.M.G (Which Dr. Strong booked), on February 8th,
and an appointment with Dr. Delaney on February 25th. My Winter Break from
school also runs from February 18-24. In the midst of all this, my twin
sister and her husband are bringing my baby nephew back to London from
Victoria, BC to be baptized on February 17th.

It was never my intention to "harass" anyone, just to try and make my life
more comfortable. That is my job as a patient. I understand that you
cannot just do my surgery, but I do feel as if I should have the right to
ask any questions I need to, from whomever I need to. I DON
PLEASE DESTROY THIS LETTER ONCE YOU READ IT. I DO NOT WANT IT IN MY
MEDICAL FILE, OR FOR ANY OTHER PHYSICIAN OR PRACTITIONER TO READ IT, BUT I
THOUGHT IT IMPORTANT FOR YOU TO UNDERSTAND WHERE I AM COMING FROM.

YOU NEED NOT RESPOND TO THIS, AND I WILL NOT E-MAIL YOU AGAIN.

Sincerely,

Jennifer Zubko