Successful trial and awaiting permanent implant
 

I am new to the board, and wanted to give a shout out to other current and prospective SCS folks. I am glad to have found you guys, and look forward to sharing my experiences, encouragement, doubts, frustrations...

I must also disclose that I work for an SCS manufacturer (started 6 months ago), and have a bias resulting from my employment.

I wanted to ask those who have had the implants what your procedure and care were like just after. I have a NS who said this is very basic and considered day surgery (outpatient). Is that right? You actually get sent home same day :eek:?

I am not one to want to be in hospital, but I guess I considered removing bone, tinkering in the epidural space, tunneling, and pocket/IPG to be more than an in-and-out affair.

Thanks in advance for your replies on the timing of your procedures and care.

Brent


Background on my back issues
I have 4 consecutive bad discs L2-L3 through L5-S1. Herniations confirmed by imaging, annular tears confirmed by provacative discogram. I have been in pain now since Dec 2008.

I am 35 and my back looks and feels like crap.

Diagnosis:
Discogenic pain syndrome L3-4, L4-5, and L5-S1.
Degenerative Disc Disease L2-3 through L5-S1
Radiculapathy bilaterally L4-5 and L5-S1
Facet hypertrophy L5-S1
Congenital pedicle hypertrophy

Symptoms:
Pain in back, buttocks, hips, legs, and recently toes and groin

Current Meds:
Exalgo 8 mg daily
Dialudid 4 mg (breakthrough)
Flexeril 10 mg (muscle spasms)
Zofran (nausea)

Welcome Brent!
 

We are THRILLED that you found us! Prepare to be bombarded with Q's since you fessed up to being an employee of an SCS manufacturer! :D

I'm sorry you are dealing with all this pain, especially only being 35!

What an interesting take this will be, since you already are familiar with this from the 'other' standpoint! The pain issues you listed are right in line with what the SCS is most successful (course you know this already :p).
So, you're getting the paddles via laminectomy I take it. Smart indeed.

The hospital procedures will probably depend on where you are located and how complex your case might be... Our friends abroad stay in the hospital for several days, whereas most of us here in the states do it as an outpatient procedure. Like I said, tho, it all depends. Hopefully your Dr is very experienced in this. Mine was that and more.....he was downright cocky! But, we breezed right thru it and I was out in a matter of 6 hours.....course I only had the percutaneous leads. Even tho I was in my little 'twighlight daze', I could hear loud and clear the way they talk in the OR! :rolleyes:

It's really great to have you Brent. You'll be getting lots of support here. The rest will be hoppin on your thread like a bunch of vultures - You might want to wear a hat :Viking:

Rae
:grouphug:

I had two SCS put in at the same time (I refer to them as "the twins"), one lumbar, the other cervical. I was in and out of the hospital the same day. They scheduled me so late in the day that just about everyone had gone home and I was laying there in pre-op wondering if the janitor was going to be the one doing the surgery! They were able to do both SCS's through the same incision in my lumbar area, so that saved time as they didn't have to do another incision in the cervical area. So, I'd say yes it can be done and you sent home that same day. I'm like you...would rather feel crummy in the comfort of my own bed than in the hospital!

Good luck on your surgery and keep us posted!! By the way, mine are from Boston Scientific...would this lil' bit of info. help to loosen your lips a little as far as who you're a rep. for???:D:D

Welcome Brent!
 

Welcome! Sorry you are having to deal with these problems!

I also have had the "twins" implanted at the same time (cervical & thoracic) but I was cut in four places....for each lead and each battery placement. I spent the night at the hospital. I also had to go back four months later to have the percutaneous leads in the thoracic stimulator changed out for paddle leads and that battery moved to the front, that was another overnight stay.

My aftercare has been pretty good. Some issues with the thoracic SCS working to full capacity, we are still working on it. My reps are great (St Jude's by the way :winky:)

Wishing you the best!
Nanc
:hug:

Welcome! I'm rather new here myself - but am relatively young like you. I'm 34, and just had my permanent boston scientific unit installed 2 weeks ago. I am in the luck group of 2 that has gotten to program their own stim after surgery....and since you work for the company, see if you can swing this!! It makes a huge difference in quality of pain coverage to be able to tweak the controls yourself. I am sure Mark will be along to tell you the same shortly :)

-Heather

Howdy Brent!
 

Well, I learn you are fairly young..... 35.... that is a fer piece back in time for me.... but then when one began to find grey hair at 26 as did I, everything becomes relative. I have to tell you though, your findings at such an age bode harshly for you, and I well and truly hope you are bound for the promise of relief through some of that technology your employer manufactures.

I am, as Heather indicates, the other self programmed individual, and as far as my physicians know, we would be the only two who have been allowed to self program our permanent implants. My pain management specialist asked that I write an article for a medical journal regarding the event, and I have had precious little luck getting attention for it.

So anyway, Heather and I are advocates of patient programming. Mine was set to my current settings July 2010 and I have Never had to seek tweaking or reprogramming. Never a revision osurgery. I am 100% thrilled! Fully withdrawn from all pain management meds since September 2010 and gainfully re-employed in my profession. Could you call me satisfied? Oh yeah to the nth power.

I am looking forward to your participation. Have a BLAST on the rest of us, and, oh, by the way...... BLAST has a meaning around here! Oh yeah.

Welcome to your new home,
Mark56:winky:

Naw
 

They are SEWN to secrecy.......:D
Yup,
Mark56:winky:

Lips open
 

Let me see if I can catch up with all of your replies here. I wasn't intending secrecy, I just wanted to be very up-front and open. I am not a rep or even close to sales for my company (St. Jude). I am in the product development side of things. Even better if you ask me then being a rep. I will have a chance to influence future product from a very personal patient advocacy point of view. :D

My niche in the company (and professional background) is in software analysis and development. Of course the big disclaimer and legal butt covering - anything I say will be only personal opinion, and definitely not company or medical advice. I also promise never to dis other manufacturers or get involved in brand wars. ;)

Thank you all for the very nice welcome and replies to my questions. Where does one go to find the hidden meaning of these keywords you guys have?

My reps, knowing my company affiliation, are very willing to allow self-programming. I also have access to some nuerosicence clinical research specialist which have offered to help tweak the programming if needed. :D

I look forward to hanging out with you guys.

Since this is a day surgery, what is ya'lls opinions on how long I should plan to be out from work? Is 1 week enough, or should I plan for longer? My main reason for asking is sick time, PTO, short-term disability and which route I should take.

I will hang on and wait for more wisdom to flow... Many thanks again.

St Jude huh? Cool, I like them (so far)...:D That is my scs brand...

Anyway, time off from work is dependent on what you do, sitting, standing, lifting, etc., as you will have some limitations and pain for a bit. When I got the "twins" implanted, I was cut in four areas and it was an overnight stay, I was out a total of a week and a half. I think I went back a little too soon.

When I had my leads replaced and battery moved, that was three incisions, and I opted to take an additional week and am thankful I did. I wasn't in quite as much pain as the first surgery, but I felt better going back to work after the extra week.

It is great that you will be able to do the self-programming. I will need to look into that like Mark56 says :D

Nanc

Time off also depends on if you are doing paddles vs leads....I just had leads done 2 weeks ago, and took 1 week off work. I too wish I would have taken 1 more. My problem was that it was very uncomfortable to drive (leaning back in the seat right where my battery was REALLY hurts) - so with a long commute it was just too much.

Coral Toe!
 

LEADS, ONE WEEK, DRIVING..... so are you a retired SEAL or something? Yeah, you bet the pocket location suture and wound healing is very early on, the channel through which the leads descended from your insertion point is still going to be very tender [I saw the spike took by which the wires are pulled from insertion to generator sight... some macabre, and it is driven subcutaneously to avoid opening the back in one long incision to lay in the wire..... You have the equation for a world of hurt driving within one week, but, then you know this personally. Takes a good two weeks for surgical pain to lessen enough for programming post surgery [of course, I had a laminectomy for the paddles], even so, around a month post surgey things calmed quite a bit. Still there was tenderness at the generator site it is was hit, touched, and such, while that wire tunnel muscular objection just had to calm..... The laminectomy site for the paddles was the least offensive, oddly enough.

Ahhhh, but at least now you know the benefit of self established programs and THAT is about the best there is.

Take care of those pain points,
Mark56:hug:

1 incision baby!
 

I know, I know I was pushing it...but in my defense - given all of the surgeries I have had, this one wasn't that bad. And, when one is trying to keep themselves employed - after having 3 surgeries in the past year or so - I had to go to work! My Doc has pioneeered a new way to install these bad boys - and uses only 1 incision for both lead and IPG placement. This means I did not have to have that tunnel-digger driven through my tissue :) And I agree with you Mark, that it is logical that the pocket site will be sore for awhile!

Oh, by the by
 

I am trying to Soapbox Rant on Brent's thread for some manufacturer out there to PAY ATTENTION TO THE PATIENT PROGRAMMING PHILOSOPHY, even as Paul, a manufacturer employee himself confesses his co-workers are going to allow him to be involved in the permanent implant programming session.

Toes may get in the way, and maybe a little overstepping involved, but I challenged Paul's employer to invite you, me, my wife, and my doc to go to them for a patient and treating physician perspective on the patient programming phenomenon. If we can swing an invite, my wife and I will gladly pay your airfare. Serious here. We have to strike in season while iron is hot and ears may be open even though our manufacturer is not the company for which Paul works.

Frankly, if Boston Scientific was interested in patient thought, we would have heard from them by now, as I have attempted to upstream communications through my rep [no success]. Having been on the Board of Directors as a heavy in a large corp before, I KNOW the boardroom conversations relevant to profitability, and what we need to achieve is attention to the patient perspective as a means to GAIN for the sake of the corporate bottom line. Too many corporate junkies are influenced by production line statistics, end line sales, and not enough on Consumer satisfaction. MrsD alerted us to the back room conversation.

So, we pierce the corporate veil of reps and gain leadership attention, we may find reps more in tune with the notion of delivering quality service assisting patients in self programming as you have done.

Casting around for support here, I am,
mark56:Demonstration::Demonstration::Demonstration ::Soapbox::Soapbox::Soapbox::Soapbox:

Go Mark!!!
 

Your enthusiasm is so awesome!!! Its hard to get through to reps who have never been in pain, just how important the programming is, and how much better it could be if the patients are given control. I would totally go with you to have a sit-down eye-to-eye meeting with any manufacturer. I'm also thinking maybe I can pull some strings with that "PhD" behiind my name. Tell me what you need Mark - I'll help however I can!!

Yep Coral Toe
 

Yep, Heather, you with your PhD and me with the JD bring credibility to the message we have to deliver, while my pain management specialist, golly, I should imagine with the medical depth of his MD and Fellowship Training, we could walk into any corporate management team or Board and present formidable believable evidence as a foundation to the argument why a manufacturer reaching for the next quarter financial star would WANT to LEARN HOW TREATING THE PATIENTS WITH ESTABLISHED AND PROVEN TECHNOLOGY PROGRAMMED SUBJECTIVELY BY THE VERY BODIES INTO WHICH THE TECHNOLOGY IS SEWN removes guesswork of present rep by guess and by gosh approaches to propel any manufacturer which GRASPS the branch into the next level.

Goodness gracious, how easy would it be to walk into any Boardroom with the opening question "how many of you have ever heard of a mattress upon which the user has subjective control over their comfort level while their mate wields the same approach via remote control?" The raising of hands MUST be unanimous. Next step, "now take the cognitive awareness of your subjective control over your comfort and apply it to the technology you manufacture for SCS. Can you see how subjectivity in programming pain management devices will yield the same or similar result?" The dawning of realization in their eyes would be palpable..... ENORMOUS once they began to interpret financially the likelihood of opening patients to an era of TRUE PAIN MANAGEMENT SUBJECTIVELY SET DOWN BY SHE OR HE WHO KNOWS THE PAIN INTIMATELY.

Fifteen minutes of a Board Meeting to present a shift in $Billions of income from competitors should catch a mind or two..... that is unless they are closed.

I rest my case,
Mark56:hug::grouphug:

:rolleyes:.....is Paul's name 'Brent'.....or did i miss something?
Maybe we have 2 guys who work for the manufacturers?

The first post to this thread is signed by Brent....
If I'm confused (as usual :o), just give me a cracker and put me back in my cage.....

Paul indicated he is a systems analyst for accounting systems.....is this actually for a SCS manufacturer? Forgive me, I'm just trying to keep my ducks straight so I can grasp on to the patient self-programming adventure. It is all very exciting, but some of it is starting to go over my head

I'm lovin this thread! So full of energy!
Thank you Mark and Heather for this great inside scoop!

Cage me instead!
 

Oh Rae..... I am so :o:o:o:o, Yep, now I will look in the mirror for my pending self diagnosis.............

Definitely! Aha! A terminal case of nitwititis also known as idiocy, the faux pas of all faux pas........

[B]BRENT please forgive me for refering to you as Paul...... maybe your middle name is Paul? Sheesh, such a clutz am I and here I am ranting in the BLUE to a rep by the wrong name..... color me[/COLOR]embarassed, give me a padded wagon, be gentle with the tug on the straps of that jacket

Now, Eva, NOW is the time for the BELLY LAUGH for which you hoped today. Right now, go for it!!

:o
as I shuffle noiselessly back into my dim corner,
Mark56
P.S. seeing my preview of this I note a couple of faux pas regarding the font and color selections..... oh well, there went a decent rant...... shouted at Paul.... Brent, are you out in Pooh's hundred acre wood or something?

Implant 1/26
 

I had the SCS (Medtronic) implanted on Thursday.(Failed back syndrome-disc removal and partial laminectomy in 1979). I don't have much if any pain at the surgical sites. I do have a darn awful rash though across my back, and from my wrist to my elbow!!! I'm wondering what happened during the surgery because the unrelenting pain in my lower back and legs has greatly decreased WITHOUT using the SCS!!! I itch like crazy, but other than that I'm doing great!

Did anyone out there get a rash???

No Rash here
 

The rash effect could be somehow from latex as you were handled in the OR. That is the only thing I can think of. Were you asked at check-in whether you had a latex allergy at all? It is a pretty standard question these days because it will cause a rash.......

Yup,
Welcome to this great group of folks, and I am thrilled for you that the surgery seems to be a success. Interesting you comment about abatement of pain post surgery..... Now THAT is an effect I did not have, as for me it seemed like an ordinary garden variety back surgery, just not quite as bad.

Prayin all goes well,
Mark56:grouphug:

I had a rash....
 

hmmm that sounds funny...
Hi Souljur! If it is not an allergic reaction to latex as Mark suggested, which is the perfect place to start, I have have a question....do you remember if anything went wrong with your I.V.? Mine "blew" during my second procedure and my arm swelled. They had to stop the procedure, move the I.V. then restart. Later I developed a terrible rash over that area and then it spread (very itchy). My surgeon sent me to my family doc to check it out, turns out I had an infection (cellulitis) develop from that I.V. that blew. With a strong antibiotic and topical cream, it cleared up rather quickly.

Good luck!
Nanc

Vim and Vigor Abound!
 

Mark56 - you are hilarious! No need apologizing, but I too was confused by the Paul reference. Now that I know it is ME, I can really engage in the discussion. :)

Once again, thanks everyone for the quick answers. I think I will plan for 2 weeks off and then return early if possible.

Now on to the hearty Self-Programming discussion. I definitely hear you on this, and I will carry the torch here internally at my company. Count me in!!

One must consider at a minimum 2 things (and I contend there are 3) when discussing the self-programming model - safety and efficacy. These are the hallmark concerns of the FDA. One must prove that these concerns are addressed before the government will allow a company to pursue this line of business. The third is the cost of development to the company. It is not epic by any means, but there will be R&D dollars laid out for this. To Mark's point, this must be offset by financial benefits and growth.

From a company standpoint, this change will mean new tools and additional educational material must be produced to support the self-programming patients. For patients electing not to program, the reps would function as they do today.

I don't mean to put a wet blanket on your enthusiasm, but I want to confess another industry-wide limitation. Our business is driven by scientific studies. In order to really change the minds of the decision makers, the science needs to be there as proof. What this means is we need a few daring souls as reps and Dr.s who are willing to conduct a scientific study to make concrete observations (objective evidence) of the subjectivity of the programming. Showing statistical evidence that self-programming yields substantively better results is the key to quick change.

Keep in mind we are challenging the norm here. It is always more difficult to break down entrenched beliefs than it is to establish good ones from the start.

So let's go get 'em team :grouphug:. I am starting my grass roots effort this week.

Hi Souljur!
 

Welcome to the madness! :D
Congrats on the successful implant! Our beloved Jackie also has failed back syndrome and reports having good relief in her legs, but not so much in her back. Maybe she would be good to compare notes with.

Are you happy with the coverage? I'm amazed that you are getting pain relief withOUT having to use your SCS!

Anyway, welcome aboard, please stick around so we can see how you fare as your surgical incisions heal.

It's great that you are here!

Rae
:grouphug:

Lets Do It!!!
 

I'm totally willing to talk to my doc about trying to do this more scientifically. Her and I have a constant banter back and forth....because we both got our degrees from the same institution (Oregon Health Science Center) - but mine is a PhD and hers an MD. She has a very open mind....and if we can get something done - I think she'd be up for it. I will also work on my rep. I wasn't thinking at the time - but now am curious if any other patients of hers have been allowed more control during programming. Mark - have you ever asked your rep about this? Why would I or you randomly be chosen to be the only people ever offered this?

And Brent - I get where you are coming from completely! I am a researcher in the cancer field, and specifically with pre-clinical data for drugs entering clinical trials, so I understand all of the red tape that must be dealt with from the FDA.

-Heather

Yeah Brent, I get it! So let's up and at 'em!
 

This is precisely why my pain mangement specialist so wants my article published, as he would like to prompt others out there to either 'fess up, or ring the bells for scientific control group studies. I do understand. I figure the FDA, which promoted useless junk wast byproduct such as fluoride from aluminum refining as a safe tooth decay protectant. Yeah, I am certain the FDA is just right on top of all..... thus those who cannot wheedle self programming from their rep get the game of twenty questions over and over and over again.

I am on the way out to purchase some bluegrass seed. Yeah, I'll weigh in. Gee, I would even donate my body for study...... oh, wait a minute, one must be dead first..... stop, rewind, reset, and we'll move forward. Death come at thy appointed hour, THEN carve me up for science, prove the efficacy of self programmed stim, and, and, and....... by then stim technology will have moved far beyond the adaptive "intelligent" technology and all will have been for naught. Ahhhhhh but to dream the dream for others!

There must be a way, there must be a way, there must be a way [Rae, this is where you click your Totoland heels together and we fly over the rainbow],

Allright Brent, my nonsense gland is empty. What is my next move?
Wanna PUSH this HARD,
Mark..... never take no for an answer.... 56:grouphug:

I am solo
 

Other than you, Heather, I am it! I tend to be persuasive. My rep thought, well, why not. My doc was absolutely flabbergasted in a WAY COOL KIND of demeanor. So, if Brent joins us, we become a group of three.... we could testify before a Congressional Committee [scratch that, they can do little more than argue], we can push as salmon upstream within Brent's company..... get me in front of a Board of Directors and we can bend ears- I have been there and done that many a time. Speak to the issue of increased profit and patient satisfaction, tipping competitive scales in the direction of a company which, through Trials demonstrates the scientific efficacy..... home run!

Gosh, I hope my trusted Doc was not leading me on.... but then he knows me as one who tends to GET THINGS ACCOMPLISHED.

Just imagine if Orville and Wilbur had awaited FAA clearance after the proof of the physics of manned flight..... we might still be riding STEAM POWERED TRAINS. Take the foolishness another step farther, imagine the environmentalists with their !@#$%!@ in a knot over the litter and footprints left....... on the moon. Where was "Pack it in, Pack it out" in 1969, and yes, I have that issue of LIFE magazine. Think back to the days when George Washington was, ahem, treated for ailments with blood letting and leeches, killed him dead it did. Oh, don't get me started....... like the FDA and electric shock treatments for patients with mental illness issues..... I had better stop..... like Congress ever convincing the taxpayers to accept a "temporary" tax increase......... I am lost..... like, "witches" [ever notice most were female] being given the kindest of treatment in Salem, MA........ I'll stop now.

I am ready to organize a million person pain march on D.C....... anyone else in?

There you go,
Mark56