From: Allison.Cozzi@f3216.n161.z1.fidonet.org (Allison Cozzi)
Newsgroups: misc.handicap
Subject: Hello
Date: 18 Nov 92 21:29:42 GMT
Reply-To: Allison.Cozzi@f3216.n161.z1.fidonet.org
Organization: FidoNet node 1:161/3216 - Computer Communicat, Concord Ca
X-Fidonet: Spinal Injury Conference
Originator: wtm@sheldev.shel.isc-br.com

Index Number: 25753

[This is from the Spinal Injury Conference]

->     Anyone have any insight and/or recommendations from their experie
-> with disk bulges and disk degeneration ?

     Now you're talking in MY field. Your injury is roughly similar
to mine...similar enough that the same measures would be employed.
Mine is complicated by some other factors and I also now have
Reflex Sympathetic Dystrophy. There are also a few others here who
have the same problem as you and I do. I know what your pain is like,
Richard and some days it takes more than distraction to deal with it!
Having come out of the Health Care Field, I jumped right in and didn't
give up until I got all the answers to my questions.  What you have been
told is correct about how surgery may and may not help...could hurt in
the long run. There is a syndrome that neurosurgeons refer to...it's
called FBSS "Failed Back Surgery Syndrome". That should tell you that
it is prevalent enough to make it into the everyday vocabulary of the
doctors. Narcotics can provide additional insult to your body in the
long run. However, Linda Cummings and I happen to know of another
secret that your Neurosurgeon has neglected to tell you. He probably
didn't omit it from the conversation intentionally. He probably isn't
trained in the procedure. It's called Spinal Cord Stimulation.
     SCS consists of electrodes being implanted in the area of a couple
of levels above your injury site. In your case, probably at about l1-2,
a thin cable being tunneled under your skin around to the front of your
body to be connected to a small (about half the size of a package of
cigarettes or a little smaller) which is also implanted beneath the
skin. This little guy is very similar to a heart pace-maker in function
and electronics. Once the everything is all in place, there is a current
sent (very small) from the electronic unit through the cable to the
electrodes. The current then passes through the electrodes to the
central spinal nerves and gives 'em a buzz (honestly...it feels like you
turned on your electric razor and pressed it to your skin). The theory
behind this is called the Gate control theory of pain management. If you
are familiar with how sonar scrambles messages, then you have just
grasped how this contraption works. Your brain can only interpret one
signal from a nerve at a time. By superceding the pain message and
replacing it with a "non-pain" message, your brain cannot interpret the
pain signal. You *will* feel the vibration of the SCS but, having been
in chronic pain for five plus years, I can assure you that you will
prefer the vibration over the pain any day! There are a couple of
different types of electrodes currently being used. Linda (on this echo)
has the small, 3 or 4 contact electrodes (I forget which it has). I
started out with that type, too. In my case, I had too much scar tissue
in my eidural space to accomodate the electrode where it needed to be.
So everything but the electronic unit was removed (they aren't
autoclaveable and are terribly expensive... about $6,000.00 for the unit
alone... so it didn't make sense to remove it now and have to purchase a
brand new on again when we got the authorization for the next surgery).
I just got authorization to go have a different set of electrodes (each
has 8 contacts) implanted (probably attached to bone this time) and
retrofitted to the unit I have. We have every reason to believe that it
will work well for me since the first one worked well until scar tissue
pushed it out of the vicinity of the spinal nerve that was the
perpetrator. The unit is run by a tiny battery which needs to be
replaced every couple of years approximately. It is a simple procedure
probably done in a SurgiCenter by opening up the incision that was used
to implant the unit (incision is about 3" long) right under the skin,
open up the battery hatch cover and replace the battery, and close you
back up. It may sound a bit gruesome but if you have been through nerve
blocks, and lived through them, you'll take this battery change in
stride! It is unreasonable to expect 100% pain relief from the
Stimulator. I have talked to a fair number of people who have them and
they feel that if they get 40%-50% improvement, then that is a success.
Before you brush this idea aside, just think of what it would feel like
to have half of your misery dispensed with. ..or be able to take half
the amount of medication...or have your function doubled (this, of
course, is a subjective evaluation). I know what your pain is like...I
am in the same boat, Richard. And I'd jump at the chance to have half my
pain taken away with the possibility of it being more. (Indeed, I *have*
jumped at the chance.)
     Now...who to have do it?  It is a highly specialized procedure and
I can recommend one of several surgeons who do this Spinal Cord
Stimulator implantation who is tops in his field. their only three men
in the country who do the even trickier one with the two longer
electrodes like I am about to have. Frankly, I wish the other had
worked for me...would have meant that I would be feeling pretty good
right now. One of those three surgeons isn't very far from you...in
Baltimore. The others are in Colorado and Texas. The doctor doing my
surgery will be Dr. Jay Law in Denver (his address is 125 East
Hampden Ave., PO Box 2901-Dept 1099, Englewood, Colo. 80150-0101.
Phone # (303) 788-6356) I have a copy of an article that he has written
about this procedure...outlining his clinical trials and I would be
happy to make a copy for you and send it if you would like to send me a
self addressed stamped 5 by 8 or 8 by 10 envelope with three stamps on
it. (I'm sorry...I wish I could continue to just send these out to all
the people I have sent it to but I'm going broke doing the footwork for
this doctor! <grin> I hope you understand.) You can send it to me at
the following address: Allison Cozzi 5100-1B Clayton Road, #165
Concord, California 94521
Furthermore, there are other methods of pain mgmt. involving epidural
narcotics administration via an implanted pump (requires *much* less
narcotics than if it wasn't used at a local level and had to saturate
all your body tissues) or even an interthecal catheter with pump (again,
much less narcotics are needed). The doctor who did your nerve blocks
would be the one to ask about the viability of either of these two
options.
     If I can be of any further help, don't hesitate to call either my
BBS at (510) 672-9325 (I have a dismal memory for names so please remind
me where I know you from) or my voice number at (510) 672-1209. My
netmail addresses are: Fidonet 1:161/3216, FamilyNet 8:7704/17, PowerNet
86:250/140. You're bound to find me *somewhere*! :) Keep the chin up,
Richard!!!
                                              Allison

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