My 7 year old daughter, Mandy, sustained a C-1 to C-4 SCI three years ago as
the result of a car accident. Now she is considered a "tetra-plegic" and vent-
dependant.
Recently I have heard of the implant of the PHRENIC PACEMAKER, a device which
stimulates the diaphram and makes it "work" again. I was able to obtain a lot
of information from the EDOBELLE Institute at Columbia University, NY, NY and
send this info, along with a request for testing from Mandy's doctor, to our
Insurance.
Needless to say - they are having a "fit" about it. Our insurance case
manager, who is a former RN, told me to be "realistic" (3 long years seeing
your paralyzed daughter on a vent is about as realistic as it can get, I
believe...) and not to deceive myself - I have the feeling, I am getting
"deceived" here. She mentioned atrophy of the diaphram , complete loss of
funtion of the phrenic nerve because Mandy is such an "old" injury. Further
she referred to a pulmonologist who, right after the accident said that Mandy
would NOT be a candidate for phrenic pacemaking. Needless to say, this doc was
working FOR the insurance company. Mandy's doctor, who usually takes care of
her, knows very little about phrenic pacing and her lack of knowledge is the
deciding factor in the insurance's decision for denial of - at least -
testing.
I called the Dobelle Insitute and asked them to send me some statistics, this
is what the insurance company wants as well...numbers, success rates, etc.
etc.
Dobelle told me that they are used to this kind of trouble from the insurance
companies and not to take NO for an answer. Certainly not from a former RN,
who suddenly sees herself as a specialist in neurology. One more thing to
ponder: Our insurance agent fought very hard for Mandy's $ 32.000 power chair.
This got her fired...then she got re-hired, but now she does not want to
"stick-out her neck for Mandy anymore".
The help I need now is this: Where - other than the Dobelle Institute- could I
obtain statistics about phrenic pacemakers? The insurance company will surely
say that Dobell gives only "tainted" statistics - "pro pacemaker" in order to
make money and sell their product. It would be important for me to find a way
to get independant statistics on this issue.
Furthermore - is anyone of you on a phrenic pacemaker at this time. Most of
all I am interested in people who got it several years POST INJURY with a HIGH
SCI, i.e. C-1 to C-2. What experience did you have with the pacemaker, how
long can you get off the vent in 24 hrs., how much - and what kind of test had
be done, how long ago was your surgery and how well (or not) have you done
with it - and most of all...how many years POST INJUTY did you receive the
pacemaker?
I know this is a lot to ask of you, but I am leading this fight for my little
one all by myself, not even her doctor supports me, and I am getting a little
desperate here.
Thank you for all your help!
Andrea