Boston Scientific Mini Rechargeable SCS
 

Okay, I told Rrae I would work up the gumption to make this so. Here we go with a thread which will hopefull elicit posts specific to the ANS EON Mini SCS.

I used to be a hard charging executive type zipping from coast to coast giving my best for a company that had been very exciting for me as a career. I had stayed with them 27 years. Climbed ladders. Served to the best of my ability, and thought I had arrived. Keeping fit was an imperative for me and I did much in the way of mountain biking, alpine skiing [my son and daughter were my ski buddies although they preferred snowboards], hiking, hunting [I had a skill set which was fun, mostly from the concept of tracking hard to locate and elusive quarry much more so than the end game], DANCING with my God given blessing of a wife of 36 years [I had been a wall flower for many years and finally relented and TOOK dance lessons to give this greatest of pleasures to my wife], playing sports with my family, you know like volleyball [sand court in the backyard], basketball, baseball, plus the usual array of gym equipment we had collected over the years. Short answer, I was having fun in this life I had been allowed.

Then there was this rapidly unfolding, trauma producing, and TERROR inspiring event of a car wreck I lived on I-70, a road which happened to separate me one morning from the flight I was to take to L.A. for more of that business which provided for my family. I was the car in front of a multi-car high speed roll over event which in a flash changed my life. My car became a non-musical accordion in which I sat. A friend who, unknowing, drove by the wreck said he prayed for whoever had been involved in "that one." So, I had the customary litany of stuff affect me: the concussion, the arms which were no longer doing right things without pain, and a back which produced agony which drove me to agony which pulled screams from my throat only a pillow to my face would muffle. Therein my life had changed. One moment thinking it had been good not to stop for that Starcoffee so I would not be in a hurry, the next wondering what had happened. 24 visits to the operating room later, here I am!

Now one would think in five years and so many medical occasions medicine could reconstruct me as some sort of a Borg wannabe or maybe a bionic super something. Not so! There has been pain. A movie I have watched over and over again with fun has been Knight's Tale, and one of the squires has this oh so humorous thing about telling someone else he is going to inflict "pain, such pain." I am there. Seems I must have attained a new level of education in pain. Do they award degress for this? Something honorary?

My wife has patiently accompanied me to most of my medical appointments. She is my rock [well, from a non-religious perspective] and I adore her. She has endured my screams, my guttural cries, gnashing of teeth, writhing on the floor..... all of the experiences that have driven any of the rest of you to this forum. She has been there and I am ever grateful.

So surgery after surgery, pill after pill, therapy upon therapy, acupuncture, massage, chiropractic, this and that and STILL I go through this pain that BURNS and spasms that JERK my limbs. Funny, but it seems I have chronic neuropathic pain, the incidence of which is empirically demonstrable through one of those fun sessions with the EMG machine. At least we have a clue it is not all in my head..... well, not all of it.

So, this brings us to this morning. It is 29 March 2010. I sit here telling my wife I will get off of the computer right away because we go for the second meeting with my next surgeon in line, the fella who may implant the ANS EON Mini in me through that two step surgical process involving at first trial, and then the real deal.

I have been through the scared stuff. I have known and well remember the pain of deep penetration back surgery multiple times. I can do this. The EMG and MRI have been done and the surgeon will review these with me today... at least I hope he will. I will let you know what I learn.

Now to the point. It would be nice if anyone else out there has received ANS device implant work and what their experiences may have been. Was it favorable? Were there issues? Are you pleased? Is that ever present pain level more manageable now? How was it working with the ANS reps? Have you regained any of your former life, and if so in what ways?

I will share if you will. Oh, and next, in early April I get to meet with the psychiatrist to learn whether I meet the standards of an acceptable candidate. Cross your fingers or pray for me if you will.

Keeping my humor, I hope,
Mark56
:winky:

29 March
 

The appointment went so well with my surgeon. He had viewed the EMG and MRI and came into the room ready to discuss options. After talking a few minutes, he spoke highly of all SCS units available in the market as he has implanted each of them according to patient wishes. The green light was given to proceed with the remaining steps of Trial and psych eval before the permanent implant. He spoke of his appraisal of me and his feeling the psych eval might prove to be an unnecessary although mandated step, in view of our lengthy discussion. Even so, I am ready to go through with the eval just to assure my fitness for the process.

Regarding the Trial, he briefed me on the necessity to maintain a steady frame so as not to disturb the leads as they will not be tied down except by those strips of tape Rrae mentioned to me [and I will apply more as you suggested, Rrae] and, of course, by the cummerbund stylin' waist belt to hold the temporary generator. Dancing will have to await fully healed in place mounting of the permanent hardware. I have placed the call to my physiatrist seeking the calendaring of the Trial.

I guess next step is to the Insuror, awaiting authorization, then we see. I felt most heartened by today's meet. Meantime the waiting continues.....


Mark56 :winky:

Mark ! That was Awesome !
 

May I be the first to pounce on your new thread and say .... !:You-Rock:

You are gifted with an incredible charismatic style of writing by the way! :Popcorn: ....it's a fun 'read' !
Your story is not only touching, but inspiring as well! You are a wonderful family man who asks no more than to simply get your 'life' back.........and with your determination and wit, I have NO doubt you will !

Thank you, Mark, for jumping on board this wonderful ship :Sinking: and sharing your adventure with us! This is the place we learn and grow from one another, we laugh, we cry, we vent, and we celebrate .......it takes true character to be able to reach out to one another, as we struggle with the unfortunate set of circumstances that brought us each here...

I personally consider it the most rewarding 'sacrifice' of all, just to have the pleasure of getting to know others like yourself......almost makes the pain worth suffering.... :nopity:

.......ok, good Lord this is getting 'sappy' :o I better quit while I'm ahead!

We'll anxiously await your updates to your thread!
We're all in this together......

You and your precious family will be in my prayers every step of the way.......

Rae
:grouphug:

THANK YOU MARK for sharing your journey and your story .
Back in 2002 when I had my SCS for face pain ..well it took me a very long time to share mine, because i was the first to get SCS for face pain. not many face pain people understood or related to me but now that I have been sharing for the last 6 or so years trying to help/ supporting others I find it so healing and almost like a blessing to be able to share and help. sadly I find at least with t.n. folks once they get away from the pain once they find a way to control the pain monster ..well they just never look back :( .BUT NOT EVERYONE is like that there are a few angels who even tho they have control they cant ever forget and they share in hopes of helping just one other person.... I am one of those.
I feel like a new one here but so glad there is a place for SCS be it for back or legs or face. I have been member here for a couple years and now find a new place I "fit in" .
I thank you so much for sharing .I am so sorry you and your family have been dealing with and going threw this. but I have high hopes that Stimulation device will help you.
I have you and your family in my prayers and positive thoughts.
Please keep us updated on how things are going for you.
low pain and positive healing energy to you and yours.
:grouphug:
God Bless
PEACE
BMW

9 April
 

Allright, so the morning arrived. April 9. The day set for my SCS preparative psych eval. All of you who reached out had given me assurances life would go on following the eval. It was just one of those Things to accomplish along the path of pain management.

We were on time. The office was pleasant, decorated in a Southwest motif, complete with waiting room chairs designed for inclusion in any PAIN practitioner's office. You know the kind. Those "I'm gonna wrench the pain from your very SOUL type of chairs. Straight back chairs. The ones with little padding...... and I sat.... for a bit.

Then the doctor came greeting me and he was really very kind in manner, offering me coffee, then escorting me back to his office. And there it was.... the waiting room chair of my dreams. A recliner. Complete with the integrated footrest. The kind EVERY pain practitioner should have in their WAITING ROOMS.

Relaxing, I lay back, levered up the footrest, took every advantage of the comforts readily provided and we started. The perfunctory identification part of the interview proceeded until before you know it, we were passing through the entirety of the litany. All of the questions relating to initial trauma, the follow on care and surgeries, the effect on life pain has wrought, a closely packed barrage of information which felt easy to provide. I felt comfortable discussing what has gone before, because I knew my presence was mandated to help in assessing my need, knowledge, understanding, expectations, hesitations, and state of life realities. Before I knew it, the time for discussion had lapsed. I had given my best.

Next was the followon millieu of questions in a battery of written multi-choice answer blocks. They were OK. At least I am not a practicing professional politician, because questions regarding whether I had ever lied would have presented the ultimate conundrum.

All of a sudden, time had burst me free from the office. It was over. Darn near the last of the hurdles to Trial SCS implant has faded to my past. I didn't mind it after all. Hopefully this doctor concurs with my others.

Now to the insurance company and the pre-authorization. Ball is in the court of doctor/insuror. One step closer. Maybe I will get to go for SCS after all. :winky:

Mark56

Successfully jumped thru another 'hoop' !
 

YAAAAAAAY :)

http://dl.glitter-graphics.net/pub/4...nv50vl9eka.gif



We all KNEW you would pass with flying colours!!!

The excitement is mounting....! :)
 

Mark
I wanted to 'bump' your thread up cuz I am really getting good vibes about your upcoming procedure! Things are falling in line and soon you'll have an actual date for your procedure.....

The way you've been soaking up every tidbit of information you can from everyone's experiences and the amount of support you've spread around since you came on board..... I just wanted to share with you that I've got that feeling of "I know that I know" kind of thing..... (it's a true form of "HOPE")......
and I'm actually getting excited to see how your story unfolds.....
And you being a man of FAITH.........you've got it made in the shade my friend....! I can see you having everything you've been confessing, even above and beyond!
I am so grateful that you latched on to this forum and are sharing your play by play.......you are so appreciated! :hug:


http://dl3.glitter-graphics.net/pub/...hrho4qy6r8.gif <<<-----this will be YOU
after your post op restrictions are over.......you're gonna tear up the dance floor and your wife is gonna think you've completely gone mad!! :p

20 April
 

So here we are at 20 April, well OK, the day after..... anyway, the Psych test was a pass, and good comment was given by the psychologist [thank you, doc] to the surgical team saying my prospects were good! I am glad to have that hurdle overcome, and now I am waiting..... waiting.... for the call from the surgical folks saying the Trial is a go and a date. Oh, and yes, I did call the surgical folks today doing the nudge thing to help things along as I might.

In the meantime, pool therapy, core strengthening, getting ready, and waiting.

Mark56 :trampoline:

Has your Doctor sent in 'THE' letter....?
 

.....The letter of medical necessity to your insurance? I'm sure they have, but it'd be a good idea to make SURE (in case you haven't been told)......
Don't want anything slipping thru the cracks on you getting your approval!

Also, doublecheck with your insurance that it's being approved and get it in writing. We are talking approx 100k procedure here!

Caring
Rae
:grouphug:

Necessity is Necessary Necessarily
 

Thank you, Rae, and the medical necessity and insurance issues are all being attended by multiple folks, not the least of which include moi. We wait and we see........

I do appreciate your caring a whole bunch,
Mark56 :)

26 April Still Waiting
 

So here it is 26 April, or rather, the latter part of the day. No news yet on scheduling the Trial. Waiting.......... Waiting some more.......... [Drumming fingers.....], good thing I still have this externally used gizmo as it gets a goodly amount of use. Still waiting.....

Mark56 :thud::Sigh:

'Gizmo'
 

I'm a sucker for silly words.......

what is this 'gizmo' ? Externally? Electrodes?
Is this like a TENS unit thingy ?

Am i being too nosey ? ? :Poke:

DO TELL! ......... You've been holding out on us!! :cool: .....we'll have to sick the 'men in black' after you for this!! :p

The Gizmo
 

Well, now that you mention it Rae, goodness, I did not mean to hold out. Oh no! Men in Black, with their ray guns and all?!?

Anyway, it is an Interferential Stimulator of ANDME branding and has a limited set of preset programs and a nice dial up intensity. The leads [an attractive red and black] connect the generator device [which I hold in a pocket of cargo shorts] to the gummy electrodes [all four of them] which I adhere to my bod so as to shock the livin daylights out of myself in an effort to confuse the pain signals [oh, I know, hyperbole, hyperbole]. Truly, it is a benefit for which I am grateful!!!!! [and that is not an exaggeration].

[a deep bow goes here]
Mark :)

Nah, no ray guns.....
We use a more subtle approach......
http://dl.glitter-graphics.net/pub/2...mreat66odd.gif

Oh, I LOVE it, so Men in Black are PENGUINS! And they kick you aside! Har, har! :D:ROTFLMAO:

Back at y'all later when I have some more to report.... waiting.... waiting...
Mark56

ANS EON Mini
 

Mark
I live in Orange County, CA, and was also a hard-charging exec until a fateful second in 2003 when my life changed forever and I was no longer an exec, mom, or musician. I have had an ANS SCS successfully installed since 2005. It replaced a Medtronix SCS, implanted in 2004, which proved to have failed due to a defect at the point of manufacture. I cannot speak highly enough about the ANS device or the support I have received from ANS. In October, 2009, I had a new, smaller battery installed and relocated to a new pocket from my hip to below my belt because my battery had shifted and it had become difficult for me to sit. The new battery has the benefit of being easier to recharge and holding its charge for an extended period. The ANS device has several advantages compared to the Medtronix device. First, it has enough leads to cover all four extremities. At the time of implantation, my RSD was only active on two extremities. However, we implanted leads for all four anticipating migration. Sure enough, my RSD did migrate to a third extremity one year later and my ANS device automatically handled the pain without any intervention on my part. The ANS device has the ability to be pre-programmed to store multiple programs, with a great range of sensitivity within each. Programming them is easy, done by their capable reps. In my physician's case, he has two full-time ANS reps dedicated to his office. They know every patient from the pre-surgery consultations, to the surgery suite, to being on-site during office visits. Every phone call is returned promptly. In the five years I have had my ANS device, I have required two replacement parts for my recharging equipment. The first time, the reps gave me their own equipment. The second time, I was leaving for my one and only trip since become ill with RSD and they FEDX'd the part to my hotel in Hawaii with a room service order of chocolate strawberries with a card to "feel better soon".

I was fortunate to have a specialist who is considered among the best in the world for SCS. I had consulted with others and ruled them out before finding him. I have sadly seen many with failed SCS's from other doctors. Here is what my doctor says is key to having a successful SCS. I pass his wisdom along to you. He says that the single most important factor is your choice of surgeon - that you must select the top SCS surgeon who performs the highest number of SCS implantations with the highest success rate with the selected vendor (i.e. ANS or Medtronix) He says that too many patients make the mistake of letting their pain management doctor implant their SCS, not realizing that their pain management doctor may only implant 10 SCS systems a year. Also avoid any doctor who requires you to sign up for other bundled services such as 30 days of PT, OT, stellate blocks, and pain management counseling as a package deal for their SCS implementation.

The trial itself will tell you if the SCS will or will not work. You will know instantly on the operating table. The downside is that the trial device is cumbersome and the stimulation from the trial device is more intense than the stimulation from the actual SCS. You will feel and look like Frankenstein, yet a thankful Frankenstein knowing that relief is available for your pain.

There is a minimum time period required by medical protocol between the trial and the SCS surgery to ensure that there is no possibility for infection in the trial incision sites. Your surgery will be scheduled once this period has passed. You will be awake for most of the surgery to be able to communicate to the doctor the successful placement of the leads. He will put you gently back under only when he needs to make incisions. The ANS rep will meet you prior to surgery, will be present during the surgery, and will meet with you post-op to review the basics about how to use your programmer and call your rep for assistance.

You will also be met post-op with a home healthcare nurse who will follow you home and set up your morphine drip to enable you to manage your pain for the first four days. He/she will visit you daily to monitor your incisions and the IV until it is discontinued.

The recovery from surgery requires six weeks and is more significant than expected. It is, however, the best investment you can make. You need to make accommodations during this time that for which the doctor does not prepare you, such as wearing only button down shirts, and no driving for at least three weeks, and sleeping only on your side, and no lifting of even the lightest things, and no showering for two weeks. But it is all worth it.

Before my stimulator, I was bedridden and only able to crawl within my own home. My neurologist had told me I would be wheelchair bound within one month.

I never needed to order that wheelchair once my stimulator was implanted! It changed my life. I cannot encourage you enough to proceed with your surgery.

There is research to indicate that RSD in patients who have an SCS implanted can go into remission or "disappear", SCS can be that significant. Doctors also know that SCS implemented within the first six months of the onset of RSD can have a significant impact.

SCS is fantastic, and ANS has a quality product with quality support. The key to success, however, is that your SCS is implemented by only the best of the best surgeons. And that is spoken by my doctor, who is one of the best in the world. I was just blessed to have found him. I hope you will be blessed in your journey. You have so many people behind you.

WOW SKOOZ!!!

You are packed to the gills with knowledge and priceless input!!
My jaw is still hanging open after reading that!
THANK YOU!

I'm so glad you've shared your success story! This forum is in dire need of that! We 'know' there are these stories out there but hardly anyone takes the time to TELL them!! Big BIG 'Thank You' ! :Bow:

Your testimony has some unique aspects to it, which have me intrigued. Such as the Home Health Morphine Pump. Wow!
Did you have the Laminectomy ?
You've certainly had top-notch quality care and that is SOOO good to hear!
They even delivered chocolate strawberries to your room!! :cool: That is so awesome........
Anyway, if Mark hasn't read this yet, he's in for a very pleasant surprise.

Hat's off to you Skooz!
Rae

:highfive: to you SKOOZ
:D
Thanks for sharing so much of yourself and your journey with all of us .
I am so glad to hear your SCS has helped and you have gotten back into life That is the best :hug: !!

I have learned some interesting things and now Gosh I am so dang lucky cus it was my pain doc who implanted mine for face pain but we did consult with neuro and he was on Stand by in the Hosp. if he was needed. I so very badly wish that when I was having mine I had a place like this forum to come to . It is a very scary thing when your the lab rat and the first to try it for certain area of body. All the people here sharing and This SCS and Pain Pump forum ROCK !!!!!!!! :cool:
Go MARK GO! I have you in my prayers and sending positive energy as you continue to what I hope wish and pray is a happy ending with SCS for pain control.
:grouphug:
PEACE
BMW

Thank you skooz!!
 

How can I say Thank You enough for reporting on your ANS experience!! This is priceless help, giving of so much additional information that I am, well, overcome! Oh, and I feel blessed with all of those around me already who have helped me through all of the MANY surgeries following my car wreck. While I have not been handed the diagnosis of RSD, I have neuropathic pain chronically in three of my extremities, although the prior surgeries reached all four. At least one of them is Good, I think.... I have the wheelchair already, because I just can't do it all of the time, and morphine, I am so well acquainted because I have to take it all of the time now in pill form and would like the day I can get away from it.

You have given me such insight into the surgery, the battery positioning, the recovery, that I feel truly blessed! And I am a person of faith who does go in for faith as an important component of my life path. This is great.

All of the recovery you describe, I have endured before with all of the many limitations, so I feel I can do it once again; most especially if I might regain some of that life lost. I would so like to resume some of the practice for which I was trained and in which I had become skilled. It would be cool if I could get back to a more productive life. In the meantime, I invented and had patented a whizbang gizmo that has given me a something to do with my moments laying in bed, because I get to do customer service across the nation via the phone and computer, and it is so cool being able to help others with their pain. I feel God gave me a means to reach out and not only put my pain into perspective, but aid others as well. Now, if I can regain strength of some measure due to less or no morphine, that will be neat. I am game for sure.

Blessings on you for your sharing, and in your life continuity- as I hope you have regained some of your prior life important things. I for one, am a musician as well and have enjoyed sharing that with my wife before hand. Maybe again, eh?

May your day be bright!
:hug: Mark56

Big Thanks and Hugs Around
 

Goodness, Rae's jaw is hanging open, I hope you have gotten it back in place :); anyway, I just got home from church, and all of you were in my prayers, and I SO appreciate your encouragement, Rae, BurntMarshmallow [my brother-in-law prefers em that way around the campfire], and Skooz... SO much information and encouragement. I'm Going! Just waiting for the professionals. Gotta make sure they try to address both my legs and my right arm! A neighbor friend who is a physiatrist, says just don't go into it with unrealistic expectations. OK. I am just wanting to release some of these opiates for others to use, as I don't much care for them.....

And besides which, maybe re-entering some of the life experiences I have let go due to pain and meds, well.... that would just be sweet.

Still waiting.... waiting...... the Lord tells us to wait patiently. I am trying, for sure. :):winky:

You all are great! :grouphug: Mark56

ANS EON Mini by St Judes
 

Mark,

We are awaiting the approval of your trial. Isn't church a salvation for those of us with RSD?

To answer some of the questions I have seen Rrae and other pose, and to help you and your wife in your continued quest....

No, your ANS SCS is not a TENS unit. Your ANS SCS is newer, superior technology, let's just leave it at that. (It's too complicated to go into.)

For insurance purposes, believe it or not, an SCS is considered DME or Durable Medical Equipment or in the same category as bedpans and wheelchairs. Can you believe it? Your employer or provider of benefits will have defined eligibility guidelines under DME. Your physican's pre-surgery coordinator should be able to make a single telephone call to your insurance carrier and get your SCS surgery approved and specifically determine what your carrier will cover. This determination is important. For example, because this is out-patient surgery, it is possible that the SCS device, the surgeon, the anesthesiologist's fees, and the home health nurse's fees are covered, but the surgery center itself are not covered, or that you have a significant co-pay or deductible.

In any case, it is good to make friends with your physician's pre-surgery coordinator. Call him/her now and politely nudge him/her and your trial will magically get scheduled at your doctor's first available opening. :)

It's important to get your trial started as soon as possible. Your trial needs to stay installed a week, and then you will need to wait the prescribed healing time before your permanent SCS can be installed.

Once again, this is when making friends with your physician's pre-surgery coordinator will pay off. Him/her will need to work you in to the surgery schedule again for your permanent SCS. I would strongly suggest that you get the first surgery slot of the morning. You will be nervous, and you will be on an empty stomach. There is nothing worse than having to wait four to six hours while your doctor performs lots of blocks on other patients. Also, if you have the first surgery slot there is no chance an emergency can delay your surgery :)

I have one more helpful hint from my SCS surgery experiences to share with you and your wife. We found it helpful to have a friend from church drive me to and from my surgeries. As devoted as my husband is to my care, we found that it was too difficult for him to see me in recovery at the surgery center. He just could not cope. So for us, we have a friend who has driven me. Each of us has so much to handle as we adapt to the changes RSD brings to our marriages. This has made our life easier.

Lastly, make sure that your surgeon is the best of the best, that he is not just your doctor who has suggested an ANS SCS, but that he does hundreds of ANS SCS implants. The key to a successful SCS is the experience of your specialist. If your doctor is not the best, travel to a surgeon who is. There are doctors who pretend to be.

Please ask me for any help you need. You have a huge group of people who care for you and are praying for your relief from pain.

Thank you, again Skooz
 

I well and truly appreciate your post regarding these follow on thoughts pertinent to SCS. We are surrounded by many who have prayed us through all of the trials of surgeries post wreck, as I have been in an OR 24 times so far. While I am not fond of the experiences, I have been well schooled on surgical pain and long recoveries followed by Physical Therapy, and I am ready mentally [and I hope physically] for this series.

We have made use of those offerings of help given by friends to drive me or us to various appointments. I have become used to such help as my driving has gone very much by the wayside since being on morphine.

My surgeon is one of the best of the best and comes highly recommended by numerous physicians whom I know both professionally and as friends. Don't know what more to do than to trust.

Many thanks!
Mark :), oh, and still waiting........

Well, yes, I did get my JAW back in place, but NOW you've got me all :Head-Spin::ROTFLMAO::Thats-Funneh::Excited::Tip-Hat: because you said yet ANOTHER silly word >> ~WHIZBANG GIZMO~
and we all know how I get when it comes to sillywords........ you win the prize for the day :winner_first_h4h:

PLUS, a few threads ago I was thrilled to see that we have somewhat of a 'horse club' within this forum and NOW i see we ALSO have a "Musician Club" too !! :yahoo: Can this possibly get any more enchanting than this!! What do you play? I play guitar (not so much lately but want to get back into it)..... played in a cute little hometown band for a few years. Hopefully Skooz will Skoot on back over here and let us know what she plays. I'm a sucker for good ol rocknroll. We played country too. At wedding dances, we'd belt out some good ol' polka even! ....... good times.

Anyway, thanks for the prayers.......keep em' comin!
I never let up on the prayers!

Rae
:hug:

Here's yer prize.....
 

A hippie poptart playing a guitar.........

In honor of your sillyword of the day, here's to you Mark:

http://dl5.glitter-graphics.net/pub/...s4t1m0j4hx.gif

PS: You should be hearing from your Doctor SOON to schedule your trial implant !

Howdy
 

Well Howdy Rae- Oops, there I go once again with a silly word.... will I never learn? :D At least you put grins on my face with your responses!! So much better than a grimace from pain, don't you think? And I thought I Loved your avatar with the SNEEZE! :):Tip-Hat::ROTFLMAO:

You already know, in prior life, I did a little bit. Goodness, you know about skiing, dancing with my wife, hiking and such. Younger years, yep, horses, dogs, milked a cow or two, fed hogs, collected some eggs for my grandmother, and such. Met my wife in college where we were both in music, jazz. She's into woodwinds, me brass and guitar. Would love to be able to attend a dance you all play, but you would have to teach us the polka. Of course you already rock. :You-Rock:

As for hearing on the scheduling of that TRIAL?????? :BeamUp: Maybe Scotty will be have the technology to beam me up before I have a date set. It's been a bit and folks are asking, and asking, so when.... I tell them they now as much as I do. Oh, and yes, I have called to ask When?!?

As for me, well, I am waiting......... I guess you will have to design an icon for waiting. Do you have one? :wink:

More later, prayers appreciated,
Mark56 :)

ASk and you SHALL receive !
 

Here's your 'customized' new avatar !

Mark....waiting for the call ....... :p

http://dl4.glitter-graphics.net/pub/...aaq9iw0w9s.jpg

yep, we gotta get you an avatar dude.
As far as my sneezing boy......i'm sure some folks are probably tired of seeing his head blow up......so probably need to make a change?

I've already been heckled (in a good way) :) about the tetris game in my signature........ lol
a fellow member here said "How am I supposed to get anything done when all I can do is stare at your tetris game!!"

Yes, stupidity does somehow lighten the pain......

Avatar- NOT the movie
 

Well, OK, I have the glasses, and the guitar..... so I took a portion of the Avatar art you put up for me and voila, there I am. Guitar Dude. Psychedelic. That was a word from my youth although not my experience.

Oh, and by the way,.............. still....... waiting........

Thanks Rae! :I-Agree::deadhorsebeat:

O M G ! You just catapulted yourself STRAIGHT into major 'COOL' mode!!
You are actually gonna be the hippy pop-tart guy!
Your avatar (and your SCS success) will go down in history!

Peace, man. :sunchair:

Peace to you as well
 

I just heard from my physiatrist's office, and now have the date for my Trial SCS, 13 May at 9:00 a.m. Colorado time. Prayers are being answered, and also much appreciated.

Rae, being the hippy dude since the era in which I grew up was that time frame is just fine by me, especially since I was such a "white sock" uncool person during those years. Never even had long hair.....

Also, Rae, I do remember.... have my wife apply liberal amounts of extra tape to my back to secure those temporary leads during the Trial, right?

Peace be to you all,
Mark56 :Dancing-Chilli:

Tomorrow Morning
 

So, aside from the Springtime snowfall which greeted us this morning, the calendar reminds me that tomorrow morning is the Trial implant date! I look to it with anticipation and some dread, because I am frankly tired of seeing Operating Rooms. Here's to a good event, hoping all will work in this bod of mine and maybe, just maybe, the pain meds will be replaced at least in major part by the Stim Unit!

Prayers appreciated,
Mark56 :smileypray::Thank you::trampoline:

Oh you and your family have been in my prayers :smileypray:

My Face pain friend just had her trial implant today this morning ..and sent email that she is pretty much pain free hers is ANS by St Jude.
I have lots and lots of hope that this will help you also.
But hey are you sure you dont want to wait a few months longer lol kidding .
we are sending you prayers, positive thoughts and a huge wish for this trail of SCS to be extremely successful for controlling your pain.
Get yourself a good nights rest and know I am sending my prayers and cheering for you. Cant wait to hear back I know it is going to be good :smileypray::smileypray:
hugs on you:hug:
PEACE
BMW

Thank you bmw
 

A big thank you for the message about your friend with the recent trial on the same unit. That is so cool! I am hopeful and do plan to get good rest tonight. I so appreciate your prayers. Oh, and by the way, as Rae suggested, I laid in a supply of medical tape to secure the leads even more so than the surgery center, because I just DO NOT want to risk dislocating them.

Peace be unto you as well,
Mark56 :Tip-Hat::Thank you:

Ya know.....i was thinkin about this.......
There's a good chance that your medical staff will apply sufficient amount of tape on you.........they MAY think you have a touch of OCD if u walk in the hospital with rolls and rolls of tape stuck in your wife's purse.....:p

Gnite Mark, you get a GOOD nite rest. :Zzzz:

Big Grin
 

Awwwwwww........ and they were ON SALE! :winky:

I will listen with care to the instructions given regarding the maintenance of the leads, and will do my best to avoid unduly messin' with the works. My wife is my insurance against my screw ups, or, rather, potential screw ups.

G'nite one and all, [is it Christmas?]
Mark56 :D

Been there, got that
 

Trial started this morning. Despite the original discussion with the Doc, they put Boston Scientific in. Seems good. Program gives an interesting feel.

Mark56 :)

Welcome back ! :)
 

WOW! So, this means no 'ANS EON' ? Are you ok with this?
Isn't it amazing the way we seem to get these surprises and twists along the way in our journey?! I wonder if your Dr changed vendors....
Well, either way, I've heard great things about BS (Boston Scentific) :).......those initials made me realize it'd be good to type that one out.....;)

Well! :grouphug: Hugs all around!
And since you're a 'veteran' of the Surgery scene, you don't need the extra
'newbie' support.......you know what's goin on!
Take the first day or two to just be comfortable.....there IS pain from this procedure, so......ice......yeah........meds.......yeah...... REST.
Try not to fall into the 'trap' of becoming frustrated by not being up to doing much these 1st couple of days. I recall very clearly how stressed I was when I came home from the trial procedure.......this SCS forum hadn't been created yet.......I outta dig it up for your amuzement.......it's somewhere in the RSD forum back in November.....boy did I ever post a 'rant'.....
If I find it I'll provide you the link just for kicks.

I pretty much stayed in bed the whole first 36 hours or so. Then, just move around your house slowly and mess with the programmer.....by day 3 and 4 is when you should feel up to giving it the REAL 'test drive'.....
The part that had me the most stressed was that I was told to go off my meds so I could see if the stimulation covered the pain......but that's WAY easier said than done!! :eek: ESPECIALLY after having a huge needle shoved in your spine!!! ikes.....maybe I outta edit that out.....not to scare others off.......it really isn't THAT bad....not much more different than the spinal nerve block injections.

Anyway dear bro, :hug: you take it easy!
It would certainly be unrealistic to expect you to be comin straight back here doing flips of excitement......it IS certainly a TEST....in more ways than one. I just hope you don't let the pressure of it all stress you out.
(I think I will go find that post of mine......and after you read that, you'll know how NOT to react!) ha. :winky:

Give us an update when you're up for it k......:grouphug:
NO DOUBT......let NO DOUBT creep in! We've been praying and doubt only blocks the flow of answered prayer!
But you knew that already..... :rolleyes:

So MUCH Gratitude
 

Our family has been so showered in prayer as we approached, then proceeded with today's Trial surgery. Reminds me of a song that begins "How can I say thanks for the things you have done for me."

We arrived this morning on time at 9:00 a.m. and departed complete with THOROUGH instruction from the Boston Scientific rep a short 4 1/2 hours later. In the OR about 1 1/2 hours according to my wife.

Amazingly, I was awake for the surgery. The sedation was mild and for the purpose of insertion of the needles and leads into my spine. Then the fun began [well, I guess it began when I involuntarily JERKED as they were inserting the first lead]. A running dialogue occurred between me and the surgical team. They did stuff. I talked. They responded. Sure, it was uncomfortable, but well worth it. I could feel electrical impulses in places that had been numb. I am grateful. I even have a picture.

I was surprised at the change up when the Boston Scientific rep introduced himself to me in prep after I had done SO much research in anticipation of a Trial implant with ANS St Judes. Even so, the rep spent so much time with me and responded to the flurry of questions I delivered in view of the change up that I was grateful STILL for the Trial implant. I wasn't about to say "Hey, I think there has been a mistake." I wanted to have relief.

Once home, a couple of phone calls to important others were made to assure them things were going fairly well, and then I fell into DEEP slumber. Awakened just a bit ago and had some dinner.

Working the remote controller has been interesting as I have begun to explore myriad settings among the four primary programs given to me for the Trial. My rep was VERY solicitous, offering up much in the way of explanation in the recovery room, and he expects communication with me every day of the seven day Trial.

Sore? You bet! Any surgery will produce that sensation, but I had been schooled in the "university" of back surgery on prior occassions, so I KNOW no Bending, Lifting, Twisting. Care is taken in movement. I have a blue ice pack on the incision area. Feeling a bit better. This concept of electrical impulses produced deep within me to address pain is truly an interesting sensation to personally observe. How do I describe it? I am not quite sure. I'll work on a description in the days to come.

One thing is sure and for certain, and that is I have HOPE. This Trial stim brings potential for relief. Feeling the electrical sensation and controlling its intensity provides meaningful insight into the world of pain management. I intend to give it my best and I will take it easy in the first few days.

Oh, by the way, I believe the surgeon and the rep applied sufficient tape so I need not worry about the leads moving. I did experience horror in the first few moments at home when the unit STOPPED WORKING! What had I done?? Did I jerk the leads free so soon?? Not to worry, one of the wire connections at the generator strapped at my waist had come free. I pressed it home, and Voila, all worked fine once again. Whew!!

Time to rest,
Thank you to all of you who have gone before me,
Thank you so much,
Mark56 :) [Not jumping yet :winky: ]

Mama Mia !
 

.....Heyyy, just by being THE 'Hippie Poptart' guy pretty much says it all! :p

MERCY! My heart skipped a beat when I read the part about you involuntarily jerked when they inserted the lead! ....... THAT could have spelled 'disaster' followed by a CSF Leak/Spinal Headache! Thank God not the case!

The best description I could come up with Re: the 'stimulation sensation' is when your foot/leg wakes up after it 'fell asleep'.....that wierd tingling......:)
Is that the same for you?
Believe it or not, it's only been a couple of months, but it's already to the point that I'll leave to run errands and not even have my controller with me because I forget that it's on. ! .......shhhh don't tell tho, .....they say not to drive with it on.... So, that isn't setting a very good example....! There are several reasons it's important to always have your controller with you.
But, quick trips (picking kids up from school, etc) I shamefully admit, I don't follow the guidelines to a T.

I don't like the slower pulse/rate setting, as it produces a 'thumping' feeling and that doesnt set well with me (irritating!), so i have it set higher for more of a constant 'buzzing'.......which uses up battery quicker, but oh well.

Well aneeeway, there'll be plenty of time to 'talk shop' later.....you just concentrate on your new bionic body-part and take care of yourself.
.....I recall the great sense of 'freedom' I enjoyed when I was rid of the wires hanging out of me....I must say, I'm happy with the permanent unit.

So glad you've got a wonderful support system there with you!
I just know this is gonna work for you and you'll get most of your life back.

How many days do you get to do the trial?

:grouphug:

Day One Post Surgery a.m.
 

Good Morning-

I left the generator running through the night on a low setting under one of the programs. Interesting, it didn't produce the Thumping sensation, just kind of a pleasant buzz. Upon awakening, I have increased the intensity as I experiment with the use and sensations. The current setting produces that BUZZ after my legs used to "go to sleep" when younger and I would shift position. Kind of the post needles sensation.

Yeah, I did JERK as they were inserting. Couldn't help it, there was such a surprise of that penetration, and yes, I received a FIRM admonition to hold still, which I did thereafter. The team was great. So far, I have not experienced a "leak of fluid" headache which could have been presaged by my Jerkiness on the operating table. Maybe I am OK. I hope so.

I have been up and around a little. Legs working as they are supposed to. Feet still numb. I don't know whether sensation will ever be restored there. I have to check on my left calf which has also been numb for the last 4 plus years. That will happen in a little while.

The buzz sensation does seem to be working to mask some of the over the top pain I have been experiencing all along. Doc told me to remain on my medications as per pre surgery.... the morphine, the neurontin, the restoril. The reason for this is to establish a sensate observation which departs from the medicated baseline. We have all known the meds did not handle all of the pain, and frankly, I had told him long ago I understood that to be the case. Gee, if I had taken enough meds to fully handle the pain in the past I would have been alseep/comatose all of the time. I wanted and still want to enjoy life.

Thus we arrive at Day One Post Surgery in the a.m. Device working, well, when I don't move wonky like and the leads unplug from the generator strapped to my waist. I also learned that upon noticing the leads are unplugged to reach for the remote and "Dial Down" the intensity before reconnecting the leads. Failure to do this is UNPLEASANT as the Jolt of energy to the nerves is enormous. A lesson learned.

Now, I am here typing, device humming away along my nerve pathways, and I am into the experimentation phase of the Trial. Oh, I know, this is only Day One Post Surgery and I am going to do as instructed and Lay Low, but I am keen on experimenting with the remote nevertheless, and I can do that Laying Low.

Thank you So Much for the encouragement, because I so want to be one of those who find restoration of Lost life experiences. So much went away in the past five plus years. I am ready, after recovery, to resume some of that.

Take it slowly, take it slowly. My mantra, well learned after having had multiple open back surgeries. Gotta go slow or the pain reward can be enormous, and besides, I want this to go VERY well. I do, I do, I do [stole those last few words from the Cowardly Lion in the Wizard of Oz].

I appreciate all of the prayers you each have poured over me, :circlelove::Heart:
Now the the rest of Day One, taking it easy,
Mark56 :)

You're doin GREAT Toto !
 

Mark,
I am amazed at how cognisant you are! As I recall my trial, I did NOT handle it with very much cool :cool: I was a mental basket case! Mostly, I believe, is because they simply did not spend much time with me. They had to rush on to the next patient.
Sure, they did a great job and they are very efficient,.....SO efficient, that I think they presume that we 'know' what's going on. They do hundreds of these procedures in any given year, but to us.....it's a First! (usually).....
I felt overwhelmed
I'm glad your Rep is there for you during this crucial time.

I hope you get the stimulation in the numb (grey areas) you mentioned. They should be able to get it to your feet.
One of my programs covers everything from the bottom of feet clear to the lower back! wow! And of course, depending on the position we are in.....could get better stimulation.....depending on how our spine is curving....or straightened...... and :o oh yeah, forgot to mention that part about having your settings turned low when you 'power up'...... you found out the hard way......... well, being guitar players....it's kind of the same thing we find out the hard way until we learn to remember to turn the amplifier volumn way down BEFORE you plug in the guitar ....or ... KaBAMM! Major feedback and embarrassment if on stage....... oh the good ol' days. :Music 2:

You are such a good sport, it amazes me.

One thing I'd be curious to know. If you happen to remember (and if you have dual leads) ask the Dr if by 'staggering' the leads, does that make for more coverage? I heard something about that from someone and it makes sense....but maybe that is just a theory.....
Things like this would be good to know when/if you go in to get the permanent implant. I sure hope you get your 'feet' back!!
We'll put that into prayer mode and hope for the best.

Thank you for the update!

I'm without a home laptop for 2 wks, so can't get on here as often.....I have to come to my office and get online.

When I was in my 6 week recovery time, I was able to be on here all the time practically! :laptop: So....if I seem 'scarce' , it's not because I don't care.....it's because I won't have access to my laptop till the end of the month.

Later Friend!!
Rae
:hug: