Yes, that's right, Intergalactic, and I am currently in a time/space continuum vortex of unknown dimension, similar to what was once referred to as 'No Man's Land', only THIS Crusade to Victory stems from that of which can only be comprehendable thru the shadows of a dopamine-induced maladie stemming from a self-loathing, conflicted pseudo-intellectual who has succumbed to that of which even the highest, most reputable pathological self-centered pompous Oaf, of Whom shall henceforth be knownst as one, Doctor "G"..... has been left to a period of solitute and restorative slumber, that of which any reputable practitioner of medicine should embark upon in order to further transcend under the guise of industry standard, mainlining the notion that the collective unconsiousness has, of course, settled for the path of least resistance.

Any questions?

Y'all doin OK out there in OZ, or have you departed on a ride through the Galaxy?

I know this blasted migrated lead thing has gotta be the worst, but, well, sometime somewhere you gotta get on the calendar of a Doc to fix it. You comin to Denver?

Concerned,
Mark56

A quick background.....

About 6 years ago I started suffering from severe pain in both knees.
Assuming that this was because I had overdone it on a treadmill, as I had the goal of walking 100 miles a month. Over-ambitious, Under-intellectual. I had just turned 40 and was attempting to 'get in shape'.

All the medical focus was on the knees, since this is where the pain was.
As time went on, the pain began radiating outward and ultimately consumed both legs and this became my NIGHTMARE.
To this very day, I do not have a solid diagnosis. There is absolutely NOTHING wrong with my knees. I did, however, suffer from a hand fracture shortly before this all began.
My medical record chart states that I suffer from 'Bilateral Idiopathic Peripheral Neuropathy/Chronic Regional Pain Syndrome, also referred to as Reflex Sympathetic Dystrophy in both legs.'

Through the process of elimination......test after test after TEST, autoimmune issues have been ruled out. Procedure after procedure after PROCEDURE, all forms of therapeutic approach proved unsuccessful. Thus, I became a candidate and subsequently a recipient of a Medtronic dual-lead percutaneous Lumbar Spinal Cord Stimulator as of February 24th, 2010.
This device proved successful in eliminating approximately 75-80% of my level 8 pain on the universal pain scale. Thus I was able to be tapered off of the highest dose of the very potent opioid therapy Fentanyl Patch. During the course of this very frustrating, disabling pain battle, I suffered bouts of severe depression/borderline suicidal ideation.

This is my background in a nutshell.

This is NOT to say that the SCS has been a Silver-Bullet cure.
I still contend with breakthru pain, 'good and bad days', psychological fluxuation, set-backs, and overall challenges on a daily basis, as do most chronic pain sufferers.
The spinal cord stimulator is a full-on commitment requiring ongoing maintenance and attention. Yet, as in my case, I am grateful for this unit because my children have their 'mom' back, my husband has his 'wife' back, my job has it's 'employee' back, and I have my 'sanity' back.

This forum has become my 'safe-haven' and I am grateful for each and every person I have met and become close with. There is an essence here that can only be understood by those who also have pain. This forum allows me to live out a part of my life that only few can truly comprehend. The type of pain we share is usually not 'seen' by an onlooker. We suffer a pain I refer to as a 'Silent' iniquity and despite the love and concern of our family and friends, even they can not grasp the full scope of what this is like.

.................................................. There! I've spouted enough for one day.
Now that I have a thread of my own, I can continue on, with the current challenges and confusion I am facing. But for now,.....I've got to go feed meatballs to my favorite plant......

All is well ...... I think the new medication I've been given is perhaps pulling me out of my element a bit......

And in what I perceive to be REALITY........on one hand, I am elated that I'm on day 5 with my SCS turned 'off' and the burning pain in my legs is under control.......or perhaps even...dissipating
BUT....indeed. I have a serious issue that requires attention.
I guess I don't quite know how to grasp on to this.

I would love to come to Denver.

So, it sounds as though you are wondering did this thing "cure" the cause of the pain, and you discovered this only because awaiting a revision and out of frustration you turned the darn thing off!

Well, how about that?

I do hope you have not started your own Little Shop of Horrors, as is indicative of your plant icon at the end; however, for as the play goes, hamburger alone is not enough......

So, you and your docs may arrive at a "let's leave well enough alone, and do nothing, let it stay shut off" approach, hmm?

If so, well, then, I would be ecstatic for you on the pain management front. I mean, like, getting back to pure normal after a while on the stim? WOW!!

Yep, Prayin,
Your Bro,
Mark56

Ok, for the sake of my unfolding 'saga', I will state to the jury that yes indeed, I concur that about a month ago, I requested that xrays be taken of my lumbar because of increasing pain. It was then discovered that one of my leads had completely migrated down, almost as far as the IPG unit itself.

So, I get the honor and privilege of getting a REVISION !

Yes, I am completely mind-boggled as to what is going on with me!
Aside from the possibility of 'devine healing' or, in 'medical terms',
spontaneous cessation of neuropathy symptoms.......which I've read about and prayed that I could possibly fall into that small percentile of statistical studies....

About a week ago, I was at work in my office and the lower back pain was SO bad (felt like someone was trying to SAW me in half!) .....I called my PM's office in tears saying that my primary care physician told me it appears that I've been suffering from 'muscle spasms' and prescribed Flexeril. Well, that medication did nothing to help. So, my pain doc called in a 'stronger' muscle relaxer called Zanaflex and said to give that a try.
Well, it seems to be working....along with Neurontin.
So, I'm not sure where to give the credit......is it because of the combo of
meds......OR is it because I simply turned the SCS OFF because of the migrated lead, which could have been what was aggravating my lower back.
But, in the past when I'd turn off the unit, the burning leg neuropathy would
immediately present itself as a reminder that the SCS is a 'lifesaver'

And ever since I've had the SCS off (5 days now), I've felt 'normal'.....for the
first time since this nightmare started 6 years ago!! All weekend I've been
doing heavy housework, stuff that hasn't been done in YEARS!
I'm in 'high gear' trying to get as much done as possible, knowing that I will
be getting a surgical revision done sometime within the next month and then the post op restrictions will start all over again........BUT, now I'm wondering
WHICH direction to take?! I certainly can't leave the migrated lead where it
is....it HAS to be remedied.....
But since I've been doing so good with my unit off, ...... ?
There is NO way I'm going to jump the gun and assume I don't need the SCS
anymore. This is a $100,000 unit that has been implanted in me and has saved my sanity from the horrible pain I had been suffering all this time...

And, since this issue is so recent, I do not have ANY clear answers and have not been given ANY medical 'direction' (it's the Holidays after all!....everyone is booked FULL)

.......WELCOME.....to my Little Shop of Horror! ....

Oh my, Oh my, Oh my....... seems the big TALK has to happen with the doc regarding the revision, the set up, the correction, the putting you back "the way you were" [please no Streisand] then if you need it you got it, if you don't you got it anyway. Gee, my surgeon says some of his users actually turn theirs off to sleep. I can't imagine, and have NEVER turned it off (a) because I have turned it down enough to know that the burning IS STILL THERE, and (b) because I have this unlucky streack, like if I turned it off, then it would not turn back on again.

Yeah, I know all of the post surgical don't do's and am still hampered by don't do lifting as my family prepares to move us in the coming weeks. I wanna be normal again. So, I can imagine you are racing around doing all sorts of preparatory stuff to get it outta the way pre-revision surgery.

Wouldn't it be cool though if you had some sorta spontaneous "healing" of the cause of that neuropathic pain though? Gee we could build a shrine out there in western Kansas, people would make pilgrimmages, some might turn in that direction to pray. I mean, well, what if it turns out you don't need the technology anymore? Good to have just in case, but only you can be the determiner of that after the revision.

Galactic travel could be fun,
Mark56

Ahhhhh, NOW you comprehend my Galactic Ineptitude, Guv'nor
....... perhaps you'd be so kind as to take the board exam......I'm holding you to your offer.......just in case something goes array........I have this vague dreadful feeling of unease...
Where Oh Where is my FAITH!?! I once was a relentlessly courageous entity!

Dearest Rrae, I know the knowledge of a pending revision and the horrors that go with it. I have been able in the past to shut my unit down for a day or two, four at the most but unfornatuly the pain has always come back with such a vengance that it has taken days and a multitude of various and sundry drugs to get caught back up. My unit is functioning now but as I continue to push my limits I find myself hitting the breakthrough meds daily, I am spending most evenings laying in bed on one side or the other, I am currently doing just that as I type this.
I pray that you are cured of this nasty disease, I pray that the pain does not attack you out of the blue and I pray you keep in contact with us
z

THANK You for this! I'm gonna stuff THIS post in my pillow and sleep with a nice warm fuzzy feeling.....You are a great friend!
See! You understand too! THIS is what I mean by the strange 'vortex' I am in! I've NEVER gone THIS long with the thing OFF! .....IZZZZ the pain gonna come back with a vengance, like you said?? It's kinda like 'the eye of the hurricane' kind of feeling.......

I'm SO glad yours is keeping up (although BARELY it sounds ) .....PLEASE don't push yourself too hard. You are prone to doing that! You work tooo hard!!

Thanks for this post Pooh!