Oh you and your family have been in my prayers

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
hugs on you
PEACE
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

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.....

Gnite Mark, you get a GOOD nite rest.

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

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

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

Mark56

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! 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!! 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, 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.

Give us an update when you're up for it k......
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.....

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 ]

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

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?

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,
Now the the rest of Day One, taking it easy,
Mark56

Mark,
I am amazed at how cognisant you are! As I recall my trial, I did NOT handle it with very much 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 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.

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! 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