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Old 04-05-2010, 08:53 PM
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Mark56 Mark56 is offline
Grand Magnate
 
Join Date: Mar 2010
Location: Colorado, USA
Posts: 4,706
10 yr Member
Mark56 Mark56 is offline
Grand Magnate
Mark56's Avatar
 
Join Date: Mar 2010
Location: Colorado, USA
Posts: 4,706
10 yr Member
Default The Process of walking the Road

Hi BP- and as another fairly Newbie to you and your husband, Welcome!! I came looking through the net originally for "what's next?" as I wait, and wait some more for the approvals to match my hopes. I am a peripheral neuropathy person so not directly on point to your husband's RSD; nevertheless, being allowed onto the SCS thoroughfare is fairly the same as I understand it.

My physiatrist, the fellow who has managed my pain for the last five years [we sorta celebrated the anniversary of my wreck on Easter!] has been pretty conservative. He came right out with the notion that the process would be a multi-disciplinary "many talking heads" look at ME evaluating the propriety of going forward with ANY SCS. Now, starting this past January we first broached the topic of "well..... is this something that would have a chance of helping?" The doc sent my wife and me home with a video pamphlet from the manufacturer we are considering. The pamphlet itself opened our eyes quite a bit regarding the product, the process, and potential results. Your doctor should be able to provide something along the lines of informational data for your quiet, private, out of office review and consideration. After all, SCS is one of those invasive procedures that results in some life change.

Now since the life change Post Wreck for my family has been mostly negative: Dad hurts, Dad is crying again, Dad is upstairs screaming [from pain, not the mismatch of socks in my drawer], Dad is not earning any money anymore, We can't go to Vail for skiing anymore, and yada, yada, yada. Sure, the toil on my family has been financial and emotional gut wrenching stuff, but we still have one another.

I was the original "fraidy cat" not wanting another of those "oh, you have to cut on my moments"; BUT, pain has a way of persuading one to consider.... at least think about the possibility of life without morphine. I am 6'2" and Pre-Wreck was thought by folks to be athletic, well, because I did so much stuff since my former work was office oriented. Most folks referred to me as "Big Guy," well, they still do, but few thought I would fear. I have feared doing this again though. Really, though, fear is pretty much past tense in this house because the prospect of re-gaining some of the life which has been lost is COMPELLING.

Many on these threads have posted both pro and con regarding the steps, the procedure, and the outcome; however, without risk there can be no gain. Right now my life is morphine courses in the morning accompanied by a good year of neurontin [and lots of it] along with the evening aperitif of restoril [because I awaken every couple hours from pain otherwise]. Life is pretty limiting thusly lived.

One cool thing about the Video Pamphlet doc sent home with us was that the included reference to their website, which we explored, included Patient Ambassador contacts. So, guess what, I contacted them. We talked, via email and on the phone. I heard good and bad, rebirth and limitation, well..... just a boatload of honesty. These folks were not paid manufacturer consultants, but folks who had received the products ready to comment about their walk. Perhaps information received from your doctors will be as forthcoming. But, I gotta tell you, it was pretty revealing to have a Patent Ambassador, and a lady mind you, telling me I would be able to use the toilet and that it would not be as bad as it was trying to recover from lumbar surgery [which I have endured multiple times].

Reading, watching, listening, and researching led me to the conclusion that I can do this.... for myself, and for my family. Have I had the SCS implant yet? Nope. I have been through multiple tests, conversations with the orthopedic surgeon who said he will be glad to do the work on me, and am now facing this Friday the last hurdle I know of to insurance and doctor's approval, the psychiatric eval to make sure I am a good candidate, not head full of alluring tales of fairies and knights and all of that, but looking at this process with an open mind to potential risks, benefits, with a sense of realism to boot.

Maybe I will be allowed the opportunity to know firsthand whether the device works through the Trial surgery. Then...... THEN I will know I am truly ready; besides, I would like to get on the dancefloor with my wife again.

Sorry about rambling....
May this process of discovery and potential for pain management be something about which both you and your husband gain comfort, and no matter the course you select, may the healing necessary to a full life be showered upon you all.
Mark56
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"Thanks for this!" says:
Rrae (04-06-2010)