Just had SCS put in - have ??
 

Hi all!

I am new here and wanted to share my SCS experience. I have had chronic low back pain and sciatica for years. I had two herniated discs which were repaired. However the growth of scar tissue has caused sciatic nerve damage and as a result I have suffered somewhat debilitating leg and foot pain.

After going the conservative route with injections, drugs, PT for two years, I decided to give the SCS a try. The trial for me was short and easy. It worked like a charm. I had the permanent placed a week and a half ago the surgery and post op recovery has been extremely painful. I stayed in the hospital for 3 days for pain control and low oxygen levels because I couldn't take a deep enough breath because of the thoracic incision.

My problem now is the dang thing doesn't work. I get twinges of tingling here and there but that's it. I can crank it up all the way but still nothing! I'm seeing the doctor and the rep on Tuesday for reprogramming, but I'm scared that something has moved.

Has anyone else had a similar experience?

Thanks!

Mary

Welcome!
 

Hi Meg,

It's great to have you here! You will find that this place houses a lot of wonderful people who aren't afraid to share experiences with the SCS....good and bad. So, welcome!!

As far as post op pain, I did have a lot. I stayed two nights in the hospital, but it was more because I became very nauseated with the pain meds that they gave me once I woke up from surgery. The night of surgery I found that I could only take Ibu and Tylenol without getting really nauseated, but of course, they didn't really seem to touch the pain. I think if I were able to continue with the pain meds, it might have been a lot different for me.

About 2 weeks after surgery, I started getting these sharp pains in my side. It felt like someone was stabbing me with a sharp knife in my ribs. I remember one morning I got up and the sharp pain brought me to my knees and had a hard time regaining my breath afterwards. I went to Urgent Care (of course it happened on the weekend) and they did x-rays and tests and as far as they could see nothing was wrong. So that Monday, I called my doctor and she said the pain could be from having the stimulator on too high. The muscles are still recovering from the surgery and if the stimulator is on too high it aggrevates the muscles thus causing pain. I took her advice and lowered it and didn't have the sharp pains anymore. I still was very sore but I could live with that....it wasn't dropping me to my knees and making it hard to breath. I was initially off work for 3 weeks but had to take an additional week off and started that 5th week as half days so make sure you give your body time to heal!

I also had problems with finding the right program at first. I think I had it reprogrammed every week for the first few months. I'd have it programmed and the next morning I'd wake up and it was off again. I knew it wasn't the leads moving because I had the paddle implanted. It's been 6 months since my implant and my doctor and I have finally found a program that seems to work. I have the ability to set it differently for each leg so if for some reason my right leg needs more "juice", I can accomodate that. I can tell you it was very frustrating at first! Luckily, my doctor was very patient with me. Of course, she didn't have a choice because I didn't go through all this to be brushed aside and was not going to give up until we had it right!!

Since you've only had the implant for about a week and a half, the twinges (or lack there of) might be from inflammation?? Or the frenquency is set too slow where you don't really feel it but it still would be working??? Also, posture might play a part as well. I know that I can feel the difference when I'm sitting straight or if I'm hunched over my computer. My incision area gets sore if I don't sit up straight.

Good luck on your re-programming on Tuesday. Don't be afraid to take as much time as you need so they get it right. I'm glad I did and didn't "settle" for earlier programs because now I'm golfing and getting control back in my life!! Just make sure you also give your body the time it needs to heal. The human body is remarkable in what it can do but if you push too hard, it will only set you back! At the beginning, I felt like it was one step forward and two steps back until I realized that giving myself time to heal was the most important way in getting control of my life back; however, I was never really good at patience!!!

:Heart:

Welcome Mary!
 

I am glad you found your way over here from the Peripheral Neuropathy forum... I jump back and forth between the two, as PN is what has plagued me for the past 6-ish years.

Kzlrogue is a wonderful inspiration, I'm SO glad she saw your plea! :hug:

You will find MANY folks here who have much to share.....the good, bad, and better! This is a fantastic team of people and we constantly learn and grow, so what you share will undoubtedly help as we journey thru this together :grouphug:

Do your best to not lose Hope!! I recall being VERY frustrated during the process of this implant. You are in the most critical stage of the process!!
It is IMPERATIVE that you have good communication with your Doctor AND the Reps from the SCS company......They depend on what you tell them!!!
The fact that your trial went so well says alot...it says that this CAN have a successful outcome! So, if something is wrong at this point they need to know. My hope is that it is something to do with programing and getting tweeked will help......

Your upcoming appointment this week is gonna be a very VERY important one......prayers and well-wishes being sent your way!
Please let us know how it goes!

Rae
:hug:

Thanks for the advice!
 

Actually I did crank that sucker up yesterday and I do feel it intermittently. Although better, the incisions still hurt and I am having a lot of back spasms. My DH and I went for a short walk yesterday and he was having fun with the fact that I walk like a drunken sailor! (And that was before I was feeling the stimulator). I have a feeling this is going to be a longer healing process than I thought, but I'm going to behave myself because the alternative really sucks.

Thanks again!

Mary

Wow!
 

Hi Mary- At a week and a half post op, I was only then told I could turn the dang thing on. They wanted post op pain to subside before I tried to do anything radical with the remote. Hang in there. The op pain will subside over time, always has here! Then, that beneficial current can truly kick in and give you the helps you need!

Prayin for you,
Mark56:)

Hi Mark:

I was reading about your adventure from beginning to end and I have to say that I found it inspirational and encouraging. I saw the doc and the Medtronics rep today. The doc says everything is healing up great but I still have the same restrictions for another 4-6 weeks. Well, just poop.

On the stimulator side, he tweaked the first program and added a second. So far so good but I'm having a lot of back spasms from all that playing around. I have to say that as of now, no regrets.

Thanks for the encouragement!

Mary

Hey Mary!
 

Wanted you to know you're in my prayers and am anxious to hear how your appointment goes....... I think you said it's tomorrow? Or today?
Either way, please give us an update!

Caring
Rae
:hug:

Back spasms are killing me!
 

So it's two days after seeing the doc and the rep and I am having horrible back/waist spasms. The worst one is on the opposite side of the implant. I'm actually going up on pain meds. I decided to turn the stimulator off for a day or two and see if it makes a difference. Has anyone else experienced this?

Thanks,
Mary

Hmmmm
 

Sorry to hear this!
I'm thinking perhaps it has something to do with the fact that you are so fresh from the implant surgery....... ?

I'd highly recommend calling your doc and letting him know this, especially since you were just there for an office visit.
I'd call right away, so hopefully you don't have to go thru the weekend wondering what's going on, or (worse case scenerio end up in ER) due to lack of communication. He needs to know this.
Chances are it's 'normal', but if I were you I'd certainly express my concerns and see what he says!
Be a 'pest' until you get answers! He's been paid VERY WELL to put this implant in you, so I'd press for answers!
I would hate for you to have to go thru the whole weekend feeling like this and not knowing for sure what's going on.......

Keep us updated!

Caring!
Rae
:hug:

Hi Mary --

Welcome to the SCS Club! Sorry you are off to a rocky start post-op. What you are describing (feelings of intermittent/low stimulation) may be a result of post-op swelling. It could take up to 6 weeks for the swelling to subside, thus allowing the 'lines of electrical communication' to run smoothly. It is usually at that point that your rep will like to meet up again with you to tweak your programming.

Sorry to hear of those painful spasms. OUCH! But, with that sort of procedure done, I'm not surprised.

As Rae has mentioned, beings the trial worked so well for you, the ray of hope for you is grande :D

Best of Luck to You for a quicker and more pain-free recovery.

God Bless!! :hug:Vanna

Hi Mary :)

I too have just had my SCS implanted on the 5th August 2010. I have Failed back syndrome with nerve pain down my legs. I do have a lot of pain around the site of the incisions and at times its so frustrating. I have a lot of swelling around the site of the battery insertion and thats quite sore also. My SCS is doing ok for the moment. I do have some questions though as regards my movements and the sensations changing. Im sure its 'normal' but it is a worry in case the leads might have moved. I am trying to be a good 'patient' but its not always so easy.

I had my stitches removed on Monday and I go back to my Consultant on Monday 23rd Aug to review my wound. Its healing well Im told. I dont get to see the Rep until September and Im hoping by then that he will be tweeking it a bit more. I have good coverage in my legs and upper legs but not enough in my back.....unfortunately I get a LOT in my feet and thats not the best especially when I have it on high and I want to walk around. I feel like my feet arent really there!! if that makes sense.

I am positive that this will all be rectified over time. Even though its just been two weeks Ive had times that I forget its there or even on!! which is great as its not a huge intrusion in my life.

My prayers are with you and indeed everyone that the future ahead will be a positive one for us all

Take care

Jackie :grouphug:

The 'Roaming Sensations' :)
 

Ahh yes!
Depending on how your spine moves, you're gonna get changes in sensation.
Completely normal!
When I lie on my back, the leads press on the spine more, so thus the need to turn down the stimulation.....

You'll get tweeked to perfection my dear!
Make sure to bring this up to your Rep at your September appointment,
Jackie....regarding the feet. He can easily tweek that outta there.
Those Reps have 1,200,231 (give or take :winky:) different programs, and depending on how many electrodes your leads have (mine have 8 each) so with dual leads, I've got 16 electrodes to fine tune.

I'm wondering if perhaps it would 'tone down' the annoying stimulation in your feet if you turn down the pulse width/amplitute ..... I run mine as high as 45 or 50, but if I turn it way down to say 20, then i get more of a 'thumping' sensation..... I like the constant 'buzzing' moreso. But sometimes that gets annoying and I have to give it a 'rest', so i turn the unit completely OFF for awhile.....I even get a continuing 'phantom buzz' after having it on for so long.
Just play around with the different settings. That's what it's there for.....
I'm sure by now you've encountered the wonderful 'shocking' sensation by having the unit up too high and changing positions?! yes? :rolleyes:

BTW, is yours a Medtronics? That would be me :)

Mark and Fiona have the Boston Sci's
Fiona just got TWINS!! Isn't that amazing!

Oh yeah
 

Changing position is always a new sensation for the stim. Turn it up, turn it down, change the program, try again. Just gotta be flexibile to try and try again. Then, get that rep on the line if you need any tweaks to program.

:grouphug:
Mark56 :)

Thats good to know!
 

Im so glad that I asked that question, because thats a great help. At first I was ummmmmm had the leads moved etc.....But today im having a good bit of relief especially up in my 'buttocks' ahem well lower part.

My SCS is an Eon. Advanced Neurostimulation System......ANS ...my literature says A St Jude Medical Company.....Jude as in hopless cases :eek: ...I hope not :)
The Rep comes over from England once a month. I dont think we have anyone in Ireland. Well not that Im aware. My Consultant deals exclusively with this company I believe.

I also have two leads in my back with 8 electrodes each hence 16......so Im sure there is a lot of tweeking to be done. At times I have also turned it off because the burning in the side of my left leg was soooo bad. I have turned it up to its max, however, my rep told me not to touch the amplitude/balance key...apparently thats for him to use. I have gone into it occasionally and changed it up/down:D but as its early days I dont want to mess up my programmes at present and will be 'patient':winky: I also get that buzzing feeling after its turned off. But Ive only turned it off twice since Ive had it implanted. It is a very relaxing feeling. I had the thumping feeling and the sizzle feeling too. Sometimes I feel as if my leg is numb to touch, but I think thats because I have it so high......... I do need to have it sorted especially when Im walking as sometimes it disappears altogether.
Like you say Rae while lying down it 'takes off';) so I have to adjust it.
Isnt it amazing how you had similiar procedure while having your implant done. So where do you have your IPG left? right? Im a Leftie;) I bet Ive read that somewhere else and its just slipped my mind. Another side effect of constant pain......forgetfulness!! or is that just old age :confused: I forget:winky:

Hope your getting a good sleep seeing as you were awake all night!!!


Jackie :grouphug:

Buzzing/Thumping/Sizzling/Burning/Tweeking
 

Boy do we have a language all of it's own! ha!
I couldn't help but get all giggly and whatnot......imagining WHAT this must sound like to someone who perhaps googled a certain term and up pops our posts describing all these strange new sensations and positions we are encountering!! :ROTFLMAO::ROTFLMAO:
Lord Have Mercy!
..........:rolleyes: i can only think of a couple of 'google searches' that would actually fit the bill to get 'this' language to pop up as a potential website 'hit'!
HAAHAHAhahaa! omg.......
One of these days i just know it........the rain will hit my parade :rain:
as i cautiously continue to push the envelope........:cool:

Oh MY and I'm a LEFTY also!! upper hip/buttcheek, mind you.
But hey, we're all family here!

So! you are an ANS St Judey! That's what Mark was supposed to be! But his medical team pulled a switcheroonie on him at the last moment!
So, yeah...better not push any buttons lest you go buzzing off out into the ozone layer! Just don't EVER hit the button that says 'Auto Eject' !

Ok, i'm making a complete fool of myself.....this is what happens when insomnia strikes!!
.......I think perhaps my Neurontin may be kicking in after all! 'Morontin', as the PN forum has dubbed this fun medication HA!
.....:confused:......did i accidentally do a double-dose?? oh my

Mental Note To Self: ....get one of those pill organizer thingys