Hi Everyone,

As I had told you (I think), Dr. Albright (neurosurgeon from
Pittsburgh)and the first person to do intrathecal baclofen pump placements
in people with cerebral palsy, in the US, e-mailed my neurosurgeon, asking
if my surgery date might be moved up. Dr. AAlbright did not tell me he was
doing this, took time to look up the surgeon's e-mail address, phone
number, etc. WITHOUT BEING ASKED TO DO SO BY ME. I thought this was
wonderful of him to do, as he is worriedabout me, just as many of you are.
Dr. Parrent did call me back, but I basically got accussed of MAKING DR
ALBRIGHT E-MAIL HIM, GOT TOLD THAT PEOPLE WITH TUMOURS, ETC. NEEDED TO
COME BEFORE ME. I guess that nothing can shake these guys. I FEEL LIKE
E-MAILING THEM TELLING THEM THAT I WILL BE SURE TO WRITE WHEN I AM DEAD,
THOUGH I ASSURE YOU I AM FAR FROM COMMITTING SUICIDE. I did not know that
Dr. Albright was going to write this letter on my behalf, he just knows
how frustrated I have been (has been getting identical e-mails to the
listservs).
I really wish in some ways that these people did not have to be my
physicians.
Anyway, here is my response to Dr. Albright:

Dear Dr. Albright,

I received a phone call from Dr. Parrent about an hour ago. At first I was
accused of asking you, or forcing you to e-mail him on my behalf. I guess
that Dr. Strong (neurologist), has painted me as a trouble-maker to Dr.
Parrent. I tried to make it clear that I did not ask you to contact him,
but that you did it as any friend would, just because you were worried
about me, because of the medication I must take, the fact that I may lose
my academic year, etc. I told him (honestly), that I had been in touch
with you prior to even considering Intrathecal Baclofen after my selective
dorsal rhizotomy, just because you were the first one to investigate
intrathecal baclofen in Cerebral Palsy. I would not even let Dr. Delaney
(my physiatrist since the age of sixteen), send me to either Dr. Strong or
Dr. Parrent before communicating with you, and had, at one point,
considered coming to Pittsburgh to be evaluated by your Movement Disorders
team.  This never did come to fruition due to my unfortunate lack of
funds. My surgery, it turns out, cannot be any earlier than 4 months away,
as people with more serious conditions such as tumours, etc. must come
first. I understand this, but hope I will at least get a date for surgery
soon. I don't tend to trust physicians to return my phone calls-- they
almost never do in my 23 years of experience. I say this having had lots
of surgery, Botox injections, trigger point injections, selective dorsal
rhizotomy, an appendectomy, strabismus surgery, and surgery to reattach my
retinas due to retinopathy of permaturity. To be honest, I don't know if I
will be able to trust Dr. Strong again, because I feel that if I have a
question it should be answered, though, granted, I don't expect immediate
responses. Yet I was told not to e-mail him again unless something
catostrophic happened, so I will not bother.

It just hurts that people who are supposed to be helping me either do not
want to listen to me, or get sick of it.... I am sick of being in pain,
sick of taking Amytriptyline,  Ativan, Baclofen, Clonazepam,  Flexeril,
and Statex, in addition to over-the counter Tylenol with Codeine, but
cannot avoid it, at least not until Intrathecal Baclofen Pump placement.

I must, apparently, wait my turn, but thank you so much for trying. It
means so much that you would contact Dr. Parrent on my behalf just to try
and help me. How I wish, at the moment, that you could do the surgery,
though you are in Pittsburgh.

Thank you for trying.

Jenn

  "Albright, Leland" <[log in to unmask]> wrote:

Jenn,

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

Dr. A