Hi, I've been a quad for almost 10 1/2 years now... about 8 years ago my
doctors discovered I had a Sirinx. I have done pretty well until January of
last year2007--since then my pain levels have increased, and I have bad pain in
my lower gut area and bad pain and heaviness in my left shoulder and arm. Also
I always have the burning, tingling and numbness thru-out my body that most
quads have . I take pain meds like vicodin a lot more often than in the past.
At night like Lori and Ron, I also take elavil- ( amitriptylene ) to help me
sleep. At times I also take lorazapam. About 2 years ago , I became a diabetic
and must take diabetes pill twice a day to keep blood sugar under control. My
doctors told me that I have Double Trouble being a diabetic and a syrinx quad
because both continue to cause more and more nerve damage and circulation
problems. At times I wonder if the pain may become overwhelming in the future
but try not to dwell on that too much, I figure these
human bodies were only made to last only so long anyhow ;-) Like most of
you, I just do my best to enjoy life and take things one day at a time.
Dan H. C-6 post 10 + yrs.
"D. B." <[EMAIL PROTECTED]> wrote:
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]>; [email protected]
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
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