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

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!!!

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!

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

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

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

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

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

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 ) 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?

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!