Now there's a scary thought! What time zone are you in, so I can be sure to be up and doing my best, albeit very stiff, back pain dance? I'm afraid if I danced naked in the streets, the neighbors would think the martians had landed for sure. Not a pretty sight. I hope it goes well for you. Pain simply sucks, that's all there is to it.

I am in the twilight zone, Central time 8.00 am. I want to feel the ground shake while leads are put in so i know you guys are doing your part, If you aint dancing i will know and i know where you live,!

Well, you're lucky. I generally wake up at 5:00 every morning (if this had happened when I was still a working person, I might have gotten to work on time). That's pretty early here on the West coast, but I'll do the pain dance for you. Best of luck.

I can't stand on my feet to well right now so I will tap my toes! Will that count??

Lets hope this does work! Best of luck to you.

Cheers

Patsy W

Good luck my friend,
Sending good vibes and prayers your way that your surgeon is hot and stacked and hopefully you will get lucky in the post-op room. This way it works either way!
Try to think positive thoughts and get a carton of Ben and Jerry's ice cream for later. I really hope this works for ya Alex. Yay for the pain relief to come,,,,,but please continue with your jokes . We love them . Big Hugs Scooter!

hey there,
I've been up since 5 am to get in a lot of extra dancing for you. So sending you all good vibes. and kneeling down saying prayers also.
so after your trial swing by my house and pick me up off the floor.
hey I sent you a pm with my new yahoo id. duh you didn't add me. ya better do so, of i'll drive out there and well would be in too much pain after drive to swing a hammer at ya.
really I am thinking of you and give me all the good news when you get done.

mary

He showed up at my house this last summer...

Dance little sista Dance just a song i'm dancing too
shoot now I need too share some of those leads from

your scs BEST OF LUCK

and we will all go out dancing when it works

I hope this time it works for you!

"C"

I'm supposed to have my permanent SCS implanted next Thursday, 2/2/2012 in the afternoon at GT Univ Hosp in Washington,DC. I had 2 trials last year - lumbar and thoracic. I got a little better relief in the thoracic than the lumbar. Overall, I probably got maybe 20%, if that, help with my pain in either area. I've decided to go ahead with the permanent and my doc will implant leads in both areas. I'm still hesitant about getting the SCS but if it helps even 5 or 10% I'm thinking I should do it. Besides, they can always remove it if it becomes an issue. I don't really have a question I suppose I'm just talking looking for feedback, thoughts, encouragement, discouragement (LOL), etc. I'm by myself and have been for a while (long story) so I really don't have anyone to talk with about this. (Oh, such a sob story! LOL) Seriously, though, I'm in my mid-50s and I've been hurting for a long time. I still work but it is only because I'm so stubborn and I'd go crazy if I didn't have work - no hobbies either. I basically come home from work. Take more pain pills. Try to watch a little TV, go to bed, wake up take more pain pills, go to work, take more narcotics at work, repeat. Nothing else in between as I'm too miserable to socialize and have friends. I have a daughter that lives over 1 hour away but I don't see her often and I need to try to get her to bring me home from the hospital after my procedure as there is no one else. I know the SCS isn't going to solve my pain but I'm hoping for some relief. It's been horrible pain since around February 2005 and only become worse. 24MG of Exalgo first thing everyday, 15 MG percocet 4x day, 10MG baclofen 3x day, 100 MG dicolfenace XR 1x day. Of course, there are the drugs for my thryoid, blood pressure, chloesterol, testosterone injection weekly, oh, yeah, cymbalta 1x a day for pain and depression too. (Thyroid was shot from 6 mos of chemotherapy in 2000-2001). I'll leave out the rest - too depressing to talk about anyway. Sorry for getting side tracked and I'm not looking for a pitty party. I'd really appreciate your feedback about the permanent SCS as I have only a few days before the procedure. Wish everyone the best. Semper fi, Jerome

Thanks all, You all needed the exercise anyways so dancing probably done all you some good lol,
Thanks for the suport,

They pulled a bait and switch on me. Rep came to see me as i was being prepared to explain how unit works and all, And i realised its not the st jude unit we agreed on,

She is with medronics same scs as i had before on previous trial,

I questioned the dr once he arrived and he said st jude rep was not avalible,

I have until monday to play around with this thing. I already zapped myself once by not turning program down when starting it back up. I just assumed it goes back to low when i shut it off, If you cough it gets more intense, I am not realy sure if thats how it will be once its implanted also or not,

I never trusted electronics much is probably why i am weary about the scs,

I will try to dowload some music with the scs unit see if it works, Git - ir -done

Good Luck, I hope it works well for you.
I haven't been online so much lately so missed the chance to dance LOL, just as well you would probably have got 40 days of rain. As far as finding where I live, in the 3 yrs we have known each other you have never been able to keep track of where I am LOL
Look forward to the updates Alex and hope this is what is going to work for you.

Liz

Wish you the best of luck on your scs implant, What i find interesting at the moment is even not having the unit on i feel some pain releif,

Now only way that is posible is he broke through some of the scar tissue while pushing the leads in place. Its hard for them to get leads in place where a person might of had surgery such as adr or fusion or both,

He mentioned the scar tissue problem while we were talking during the placement on the table, In my view if i have so much scar tissue in the canal where leads are hard to have room for them then would that not somewhat explain why there is pain there?

Ok who is an expert on this raise your hand?

I am new here, but not new to the SCS, I had mine implanted in 2008, and it was the best decision that I made for my neuropathic pain, since Lyrica and Gabapentin were not for me! So I wish you tons of luck!!

My device is the Boston Scientific/Precision model, but to tell you the truth, they are all basically the same, but what sold me on the BSP, was the company rep., this guy will answer my questions during the trial at all times of day or night, he was and still is wonderful, so maybe you might want to make sure that the rep. is commited to his patients.

I had a couple of hiccups during the 1st 6 months of my perm one. One day about 8 weeks after the perm was implanted the device stopped working! I was in so much pain, that I ended up in the ER, when my PM came to the ER after a CT that the ER Doc ordered, he couldn't believe his eyes! the leads dislodge from the T-10 area were he had placed them, and they wrapped around the battery that is in my right butt cheek, and it looked like a yo-yo, it was wild! This happened because my PM decided to do the leads without the paddles and plate, so I guess I moved too much or something, so they came loose! But from that experience I tell everyone that is going to get a permanent SCS; "please, get the paddles and plate put on right of the bat!, a Laminectomy has to be done for this extra step, but is darn worht it! After that happened the leads have not migrated at all!

The other hiccup happened last year, I was having problems getting my battery to stay charge, usually one charge will last me for 3 to 4 days; and this is with me keeping the device on 24/7, so anyways, I mentioned this to my PM Doc, and he said that he was going to check it out, a week later he calls me and ask me to come in... Well, the battery that he put in in 2008, was been recalled because of having issues with not lasting as long as it supposed to, so I went in, got the new battery installed; and of course, Boston Scientific payed for everything, and to this day, I am all good! I tell these stories not to scare you, I tell them because I don't want you, or anyone getting an SCS to give up on the device if little hiccups like this happen, if it could happen to a new car, why not to a battery, right????

OK, you take care, and I hope that this is a very succesful trial!

Take care,

Enid

Hi, I also wanted to wish luck with your perm installation. I've had 75% nerve pain reduction with my SCS, but 0 pain reduction on my mechanical pain, which is what my PM Doc told me it was gonna happened, since the SCS is basically designed for nerve/radiculopathy pain, but I take my meds for my mechanical pain, and with the SCS and my meds, I have less days of 10+ days and I've become a nicer person!

I hope that the device works for you, and that it gives you more than 10%, good luck to you, and let us know what happens.

P.S. - Try to read the post that I wrote for Alex, I want you to make sure that your SCS is installed with the paddles and plate right of the bat, you don't want those leads to migrate if it can be helped right from the beginning. Take care,

Enid

I suggest caution with recommending that others request getting any specific type of lead. Every situation is different and what may work for one person may not necessarily work for another. Paddle leads while very effective in reducing the possibility of lead migration, aren't appropriate in all situations. Some folks have limited space and whereas a percutaneous lead or two can be inserted, a paddle lead cannot. I would hate for someone to give up on getting some possible relief, because their doc refused to consider a paddle lead. For those with cervical issues, paddle leads are rarely considered due to the amount of movement, thinness of the dura and tightness of the canal space in the cervical spine.

I have two percutaneous leads that were placed in the Spring of 2008. Neither have moved or migrated. I tore the anchors loose that are placed to keep the leads from being yanked and they still stayed in place. There are anchoring systems for the percutaneous leads. They are not just left hanging willy nilly in the spinal canal. I would be curious as to how your first leads were anchored (or not) that allowed them pull loose and wrap up around your IPG.

Alex

One thing that the SCS does, is stimulate the release of your body's own natural endorphins. It could be part of the reason you are experiencing some relief even when the SCS is shut off.

Kindest Regards,

"C"

Just spoke with the rep, She says stop calling her or she will file sexual harrasment charges on me!

All i said was ahhh ohhhh yeee baby that feels good. I was just trying to keep her updated on my scs progress!

C. You could be right, Rep actualy just said many people only have it on few times a week and still get long term releif, But i wish they would have used the flat padle leads because the stimulation is too far spread all over the place,

1 program i thought i was having an orgazm. Git-ir-done.

We agreed on the flat leads before the trial but he said regular leads is fine for trial and implant will be flat paddle leads,

I wanted the same feeling i will have after the implant during the trial not this leads now and other leads later,

I hate when they tell you 1 thing and do another,

Hope it works out for you dude. While you're still under test, grab your clubs, head down to FL, and see if you can do 18. If you can't, tell the rep it don't work.

Oh, we don't want to know anything about the orgasm setting you pervert... roflmao...

Good to hear all that dancing was not wasted! Really feels THAT good, eh? Maybe I should reconsider getting one? LOL Nah - my pain levels are low enough I don't need to consider it anymore. Have fun with it!

well alex i hope you can get back to the pole dancing you have been known for. hope it all works out for you. 3 times a charm!!!!!
rose

Each manufacturer has specific percutaneous leads designed for trial implantation. They are designed to only stay in place on average no more than 10 days. They are designed so that a surgical suite is not required to set up the trial implant. Saves time and tons of money.

Once you go with the permanent paddle leads, it will be much easier to get proper stimulation to cover the pain areas. Having a good rep is crucial in getting the programming set up nicely.

I've heard of folks that have their SCS program running on a timed schedule for on and off. I couldn't get away with that. Mine stays on continuously. I know that if I feel bad in general and I adjust the stimulation, I can give myself a burst of endorphins and wipe out that horrible feeling.

Best wishes on a successful trial and quick schedule for the permanent should you decide to press ahead.

"C"

Hey Alex, I just caught this thread. I hope this thing works out for you, I know you have tried it all. Best of luck and watch out playing with that one scs program, you might go blind...Mitch

I dont want these leads removed, I was already thinking to tell the dr monday leave it in so if the pain dont come back and stays like this just snip the ends off and who neets the stim,

The leads alone have created where the leg pain is not realy there, Only diference this trial is he went all the way up to l2 i heard him say and i think 2nd lead going down through all the scar tissue of the l4l5.

C i am hoping you are wrong about these leads not ment to stay in place for more then 10 days. Because i am ready to leave the country and not let them remove these leads right now.

Is it not posible that it opened the spinal canal from all the scar tissue from multiple surgery? Somewhat like when a stent is put in for a blocked artery?

Monday is only 4 days of trial so i think i will ask to extend the time until friday if posible to be more sure if i have to even turn this thing back on or not,

Because right now this has nothing to do with stimulation from the scs, This is simply the leads being where they are at, And he will take it out over my dead body,

hmmm you will try anything to get orgasm jeeezz.
I sent you a private msg...did you get it,, hmmm I don't see you added me on.
So are you getting pain relief or just music and orgasms
I'm hoping this thing is helping you out.
Send my this docs info in pm if it works for you....
I have to find a pain mang. doc soon.
glad to see your still kickin.
give me a call.

I know ya miss chatting with me.....
tc
say hi to pretty gal for me.
mary

And you gave me crap about my tens dare on a drunken nite. Roflmao. Glad to see you are getting some relief ol'friend.

saw this thread Alex, and as I went through it, was so happy to see that you are getting some relief (either from the leads themself or the stimulation)

Missed doing the dance for success before it was implanted, so will do one now that the success continues through the trial and if you decide to, with the permanent one. Might do some more damage doing the dance, but hey, I'm having surgery next week so they can fix it up while they are in there.

Hope it all works out for you Alex, you have been through enough trials,surgery,etc...time for some relief.

Karen

There has to be a balance between doing it over and over till you get it right & The defination of insanity is do it over and over expecting different results.

Find the balance Grasshopper! - Now snatch this pebble from my hand ... using your toes!!!

Get-er done!!!

d

Alex...I have read all the comments to this post and have yet to read if you are getting good coverage where you need it and is it easing your pain??(Did I miss it?)

That is the big question. Please, please tell.

I do not believe that shoving a thin needle through your skin would help the scar tissue in any way. Besides....as you know more scar tissue will form. Sorry..

As for leaving the leads in. I would not think you would want to go around with exposed wire dangling from your back!

As for your Doctor not using paddle leads yet. I do not think you would want to go through the more invasive and painfull surgery that is needed to implant paddle leads. Why go through that unless you are 100% sure the trial will be a success?

Now if you are dead set on keeping this information secret. Please send me a PM and I promise not to tell anyone!! No matter how much I am beaten or stomped I will keep your secret! My lips are sealed!

All joking aside Alex. We are all hoping this is going to work and give you some pain relief!! You have suffered much to long as it is.

Patsy W

My theory is as good as any about the scar tissue and leads pushing it aside i believe,
Only reason i know this is because previous procedure i had that cleans scar tissue by going up the spinal canal with something thats similar to the leads and they flushed some solution through it and when that was done i had the same releif i have now with these leads in,

Sadly when that procedure was done the pain came back few days later,

But long story short, Scs helps yes, but it would help more if they can fine tune it posibly wirh flat leads so the stimulation is not so wide spread,

Trial is only complicated because its very sensative so any movement you make or if you cough it will get more intense,

The rep explained it wont have that issue once its implanted because it has a feature something like on the smart phones or whatever to where it will adjust itself to keep the same stimulation even if you move around,

If thats true then it should be less complicated to control the stimulation and keep it at the right seting,

I am assuming hagland c has the same set up?

Yes, the trial leads are very positional. All I had to do was turn my head and the stimulation changed. But the permanent implant will not be like that.

Can't the rept get the pulse width adjusted to where you get the stimulation right where you need it? I do hope she can.

Because the leads have stopped your leg pain(I believe it was in you leg)you do not know if it will reduce that pain or not do you? Perhaps that pain will not return.....but I believe that is to much to hope for isn't it?

You can't skip out of town with the leads in! What would we do without you to brighten our day with your great sence of humor? I would be sitting here staring at my comp with a very long face!!

Best of luck my friend. I am truly hoping this will work for you.

Patsy W

Do 18.? Hmmmmmm. I would be happy with 9. You just had to bring it up eh? Damn i miss playing golf, Just when i was geting good at golf surgery stoped me from beating tiger woods, I could of been the 1 with all those chicks he was sleeping with,

I still dont understand why he needs rehab for compulsive sex, Was he realy that bad in bed? He was trying to get beter to make his wife happy is why he probably needed more then just 20 woman,

I think his heart was in the right place but even he cant play over 18 ho,s.

Git-ir-done

I called to extend the trial for 2 more days, And now that i have a flare up this thing aint doing crap, its totaly missing the back part of my legs and the burning pain in my lower spine,

Stim is hiting front part of my leg only, this is what i was afraid of will hapen,Why is this scs working for others and simply dont work for me i dont get it,

I know i am wired half ass backwards but sheesh give me a break, This is 3 rd trial now and cant make it work,

I dont know if i should roll the dice and push and hope he can direct it during the implant to where it needs to be or not,

I knew 3 day trial was not enough to see if this works and here it is 4th day and no way that it helps the way its set up right now,

I know they will just pull it on wend and its my decision if i want to roll the dice or not and posibly have dr do a diferent placement, This sucks,

These things just do not work for everyone. We all are not wired the same.

Yes indeed it sucks, really sucks. Is this the way the other 2 trials went??

I have read reports from others who have the same problem. Their trial failed because they just could not get the stimulation where it was needed.

All of us were hoping for a better report than this!!

Patsy W

The other 2 trials were much worse because leads were out of place by now, 1 st trial was long time ago before surgery in 2004. 2nd trial was maybe 3 years ago where leads moved also,

This time at least leads are still in place, i had to find a position on the recliner where i got some stimulation close to where needed, If i am in the right position then it helps a litle,

I guess things will never be perfect for pain control so i think i just have to go for it and hope for the best, 8 years of how its been with this nerve pain on left side and both legs hurting all the time is not an option for me any more,

Surgery is no longer an option so if this is all they have then be it , Scs here i come,
I am done playing games with injection after injection, Pain pills and more pain pills,

I give up almost 10 years of my life already fighting this bs, Another 20 years before that with the regular back pain,

I am 51 years old already, I can live with giving up golf, But no way i am giving up fishing and any other simple pleasure in life even somerhing as simple as going for a nice drive or simple camp in the woods,

Catch gaters wirh my bare hands and hunting wild boar with nothing but a swis army knife,

Ok wait, i could not do that even before my back surgery, Forget that last line,

Geees...How I wished this trial had turned out better. But I do understand why you are willing to take a chance on the paddle leads working better.

When we are in chronic pain 24/7 we will do anything to ease our pain. Had my Doctor told me that eating a can of slimey worms would ease my pain I would have gobbled them right down!! (Well....I may have had to smother them in ranch dressing or hot sauce first!! LOL)

Hoping for the very best for you Alex.
Patsy W

What I have found over the last few years, is that when I get a flare up, I can redirect the stimulation enough to knock things back down. In order to redirect, that means either by taking a break and hanging out in the recliner while I super blast myself with stim, or by changing my body position temporarily to redirect it. I can redirect for a few minutes to a few hours and knock down the worst of it and get an endorphin release going.

An SCS is a management TOOL and as such it is a part of your tool box towards pain management and life. I'm 50 and I have been able to go from being housebound to fishing, hiking, riding and working once again! I have learned how to use my stimulator as a part of my pain management, not as my sole pain management option.

"C"

Alex, you can thank me for that orgasm. I did some Dirty Dancing!
You think you could do the same for me? I'm over due!
Jim

Yes i think i understand, I might have to make a mental adjustment that this is not a fix,

And if there is no fix then i guess you have to work with what tools you have i guess,

Appreciate your input!

You want me to give you an orgasm what? Oh man that sounds so wrong dude. Lol

Just do the dirty dance.............PLEASE!
I could use one!
Jim

Ok Jim. Soon as they pull out my leads tomorow, i will be happy to dirty dance, We will all do a dance to help you also get an orgasm,

Hope your recovery is going fine dude, We all deserve pain free life and multiple orgasms for life. Lol. Git-ir-done

I dont wanna interupt you and jim.
Just wanna wish you all the luck getting your inplant operating properly.

I havent been on much lately lot of stuff on my mind, but it definitely appears ive been gone to long.

Anyway i hope it all works out for ya, the good the bad and the o never mind. LOL

Lol. Thanks blazer, Hope all is well there,

That is bummer Alex. As C says though, it's a tool, not the fix. Listen to that lady, she's smart and has no quit in her. She has adapted. You can too. Use the hell out of that tool. Maybe you can do 9 in time with that added to your tool box. If I get up your way I'll chauffeur you and caddy for you to do 9, no problem.

Remember, never give up, if it helps some, that's better than nothing.

If it helps when you change position during a flare up then maybe doing some sort of stretching and cranking it up will hit the right place. Try some form of pilates or yoga stretches and use it. Just random thoughts.

Good luck with the permanent leads.

Why did you not proceed with the permanent scs after the first and second trial? Did you make the decision or your surgeon? Did the doctor that placed this trial, place your first two also?

One more question...do they take out the trial with the use of fluoroscopy so they know exactly where the leads were during the trial?

Good luck with your surgery!

Lisa

The doc will have flouroscope images saved of initial trial implant. Generally for removal of the leads they simply remove the bandages, cut the stitches holding the lead to the skin and pull the leads out. You can't even feel the leads pull out. During placement of the permanent system, they will bring the patient out of anesthesia enough to have them tell the doc and rep if the coverage is in the right general area. Once they establish that, then lights out and wake up in recovery.

Images are taken of the permanent lead placement for reference.

"C"