Re: A Mother desperately in search of help....
- From: "Gixxer" <gixxer@xxxxxxxxxxxxxxxxx>
- Date: Wed, 15 Feb 2006 02:26:36 +1300
I sorry to hear about your daughters suffering. Have anybody discussed an
intrathecal pump with you? They are implanted in the body and deliver
medication (usually Morphine) via a needle directly to the spinal cord. The
pump is refilled as required by an injection through the skin.
It can be programed to provide as much drug as is required and I belive some
of the new ones can actually operate like a PCA where an extra dose can be
provided as necessary. This would provide freedom from being tied to a PCA
and might make the docs feel better than having injectable liquid in the
Also because the meds are delivered directly to the spinal cord less drug is
required than a normal IV injection.
I hope you find something for your daughter soon. I, like many here I
imagine, know the feeling of lying on the bed screaming in agony and feeling
like nothing will ever be OK again.
"cyn999" <cynnyc@xxxxxxxxx> wrote in message
To Whom this may concern:
I am the caretaker of my 31-year-old daughter, Erika Stewart. She has a
spinal cord that is splitting in half (syringomyelia), spinal stenosis,
endometriosis stage IV - worst stage, IC of the Bladder, and vulvadynia.
She lies in bed all day crying or screaming in pain. It's a wonder that
the police have not shown up at our door due to her screaming. But it's
the only way she can live in this agony sometimes.
We live in the San Francisco Bay area and we've been told (doctors) she's
experiencing something called "customary care of the area."(?) She needs
neurosurgery - but every doctor she's seen has said, "we'll wait and see".
She's also just been diagnosed with MS.
What are we waiting and seeing about? The only known outcome of
syringomyelia is paralysis - then death, with a very painful and disabling
pain accompanying it.
As many of you know - no doctor will contradict another - so there's no
use trying to go to another neurosurgeon in our area. So we're left
reaching out wherever we can.
It's not easy, physically or financially right now for us. I'm an RN with
36 years experience in the field - but to watch this abomination go on
with my daughter is killing me.
Erika has oral pain medicines, which control the pelvic disorders - but
they don't touch the spinal cord pain. No one in the Bay area feels
"comfortable" enough to give her injectible medication. She needs a PCA
machine where a injectible narcotic would go right into her vein. This is
a supervised activity, through a home health agency. The doctors have
allowed this 10/10 pain to go on for so long now, nothing else helps with
the pain. Doctors here are "uncomfortable with injectible narcotics".
(We wouldn't want doctors uncomfortable now would we? To hell with
I truly believe if doctors and patients everywhere would ban together
right now in a all out effort to stop this Holocaust happening to all
patients, maybe then we would see some change.
Last night my daughter told me President Bush just allotted 9.9 million
dollars to track all narcotic prescriptions of chronic pain patients
everywhere. (Again, is this a holocaust or what?) It really surprises me
CP patients aren't stuck in some concentration camp somewhere right now,
left to die. Maybe that's to come - who knows? They might as well take
away our food and water - because CIP patients CANNOT LIVE ANY KIND OF
LIFE without their pain medications.
I really can't say what's going to happen to my daughter now. She has
reached her limit of tolerating unrelenting agonizing pain. And being a
registered nurse and not being able to help my own daughter, is agonizing
for me. I lost one child many years ago to cancer because the doctors
would not listen. Now, I fear I will have to bury a second child because
(again) the doctors are not listening. To bury one child is unnatural in
the scheme of life. But to have to bury 2 of my children is too much to
bear in a lifetime.
Why is our government refusing patients their right to pain relief? Why is
our government so dead-set against people who suffer with pain in this
country? Why do they continue to target our doctors - when so many illegal
drugs and contraband continues to cross our borders everyday? Maybe before
long, these same 'drug warriors' will find that they TOO are in need of
pain relief - but won't be able to find it. THAT would be justice.
I wish somebody with some power could get the MEDIA "with us" in exposing
the governments' torture of it's (very) own citizens. How can they get
away with this? Just because they can't stop the illegal flow of drugs
across our borders - they decided to go for the easy targets in America -
unsuspecting doctors who treat pain - and those too ill to fight back.
This is no different from Nazi Germany during its rise to power.
Anyway, we're in need of a reputable nuerosurgeon, if anyone knows of one.
Anywhere in the country, I guess...we've no other choice.
I can be reached at fenderstratg1968@xxxxxxxx I'm a nurse consultant for
the Endometriosis Association and Chronic Pain Advocates (CPA). We are
fighting as hard as we can - many of us are so ill and in such pain that
it's very difficult to fight for our rights at all - but continue on, we
do. So if anyone knows of any media people who might be interested - or
Congressional people who would want to help - I eagerly await your
Mother, Caretaker, and RN
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