Having had a syrinix for over 6 years I've made a choice not to have a surgery
that more then likely will just end up in failure. I would like to hear more
from any of you that have or had a syrinix and what kind of pain you have. The
pain that I've is a constant pins a needles feeling from mid chest area out my
arms and finger tips to my toes. A feeling like someone has a vice grip on my
groin area all the way up to my mid stomach area all the way around to my back.
The pain med that has helped me is 2700 mg of neurontin a day and two darvacet
at night. These two drugs seem to keep my pain on a even level with no spikes
As far as my bowel and bladder issues I'm doing pretty good with both.
However there are times that the darvacet leaves me a little constipated I use
a magic bullet to help move things along.
Living with my choice has made life difficult for me since I'm confined to my
wheelchair, home-bound and dependant on my wife for my care full time. This
at times creates a lot of friction between us but after 28 years of marriage we
have learned to go to neutral corners and after a little time things get better.
So I'd appreciate any of you that have dealt with the experience good or bad of
dealing with a syrninix to please share your own experiences. This hopefully
will help others.
David B.
----- Original Message ----
From: Lori Michaelson <[EMAIL PROTECTED]>
To: Amy Davis <[EMAIL PROTECTED]>; quad-list@eskimo.com
Sent: Sunday, January 6, 2008 1:54:25 PM
Subject: Re: [QUAD-L] Neck! Syrinix question?
Obviously my voice softwarel typed out "Heaven is" rather than "having a" in
my e-mail below!
You would also think that voice recognition software would be more perfected
by now as well! It saves my user files over and over and over again but it
always makes numerous errors many times. But it's still easier and much faster
than having to type with my fist or fingers or a pencil!
Lori
On Jan 6, 2008 2:50 PM, Lori Michaelson <[EMAIL PROTECTED]> wrote:
Again, everyone is different so it is a crapshoot. Some people find relief
with surgery while others do not. I had success with draining it for the first
two years but even though my shunt did not fail... I began having other pains
in that area and a wider area around my spine.
To be honest... just like Heaven is spinal cord injury... people can try
different things but you will find that it is far from being so simple as
"there has to be something that can be done." Oh.... how I wish there was! My
life would be 100% better if that miracle cure (along with a cure for spinal
cord injury) can be found with this rare condition.
Even Craig Hospital admits that surgery only has a 50% chance of helping.
Sometimes people find that a certain drug helps them enough to get by while
others, like myself and Corie Jones, cannot find anything that works.
Lori Michaelson
C4/5 complete quad, 28 years post
Tucson, AZ
On Jan 6, 2008 8:54 AM, Amy Davis <[EMAIL PROTECTED]> wrote:
I know a lot of you have to Deal with a syrinix. My question is this. Is there
any relief? Have any of you had sucess with draining it or with surgery? Does
it always come back? There has to be something that can be done.
--
Lori
C4/5 complete quad, 27 years post
Tucson, AZ
____________________________________________________________________________________
Be a better friend, newshound, and
know-it-all with Yahoo! Mobile. Try it now.
http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ
