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- From: Allison.Cozzi@f3216.n161.z1.fidonet.org (Allison Cozzi)
- Newsgroups: misc.handicap
- Subject: Hello
- Message-ID: <25753@handicap.news>
- Date: 18 Nov 92 21:29:42 GMT
- Sender: news@bunker.shel.isc-br.com
- Reply-To: Allison.Cozzi@f3216.n161.z1.fidonet.org
- Organization: FidoNet node 1:161/3216 - Computer Communicat, Concord Ca
- Lines: 110
- Approved: wtm@hnews.fidonet.org
- 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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