Problem Programming SCS

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reginaknits
New Member


Date Joined Apr 2011
Total Posts : 4
   Posted 4/26/2011 6:00 PM (GMT -6)   
Hi Everyone,
I had a Medtronic RestoreULTRA spinal cord stimulator implanted March 3, 2011 and Medtronic has not been able to program it for my (Lumbar)pain . All of the stimulation is in the front of my body - thighs, knees and the bottoms of my feet! Has anyone else had this problem? They are telling me that I must still have a lot of swelling from the surgery. However, why would they try to program it at the hospital, and then have me come in every 2 weeks to try again (1 1/2 hours of trying) if all the swelling has to be gone before they can program it? I'm really scared that I went through this surgery for nothing!
I would appreciate any information you have.
Regina

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 4/26/2011 7:21 PM (GMT -6)   
Hi Regina and welcome to Healing Well's chronic pain forum. I am sorry that you have to be here but glad that you found us.

I do not have an SCS Unit, I have a pain pump. We do have some members on here with units and have had people on here in the past that has had problems with the units for one reason or another. How did the unit work when you had the trial? Did it work properly during the trial? I have heard from different people here problems arising from the the unit being implanted too deep, leads moved from original place after surgery which is a common thing, not being able to recharge the unit to even a defective unit. These are just a few of the problems I know happening with these units. And yes, like you I would hate to think I went through surgery for nothing.

We have a search option here at the forum that is located at the top of this page on the right., If you will type in SCS Unit you should pull up a lot info about these units as they have been discussed a lot here at the forum.

Anyway, I wanted to pop on and tell you welcome aboard.
Moderator Chronic Pain Forum

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/26/2011 8:18 PM (GMT -6)   
Hi Regina, and a warm welcome from me :)

I have had my SCS for five years now - I'm actually going back in to have mine revised on Friday - but sometimes it is necessary to leave things to settle down a while after surgery.

They do try to program almost straightaway to see if they can get some pain relief happening for you ASAP, but I know from my past experiences, my stim patterns can fluctuate quite dramatically for up to a month or so after surgery (Friday's op will be my 5th)- due to the swelling settling down, scar tissue developing as the lead heals into place and so on.

As Straydog asked - did you have a successful trial? Did they have you awake when they implanted your permanent lead was in the correct position?

I hope that it is just a matter of your body settling down. Programming is something of a fine art - even for a simple percutaneous lead with the 8 electrodes, there are so many different possible combinations - and I hope it is probably just a matter of finding the right stim pattern for you.

*gentle hugs*

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 4/26/2011 10:22 PM (GMT -6)   
Hi Regina. Welcome to the chronic pain forum. We're glad that you joined our family. I don't have a SCS untit either, but I wanted to let you know that I'm here to support you too. You take care. The info. you've already got is valuable, so I hope it helps.

hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

reginaknits
New Member


Date Joined Apr 2011
Total Posts : 4
   Posted 4/27/2011 9:45 AM (GMT -6)   
Thank all of you for your responses to my post. I have felt very alone in this situation. The neurostimulator was my last huope of relief from unbearable pain.
I did not have a trial. The neurosurgeon said that since I had had one before and had been pleased with it, then I didn't need a trial. Hmmm. I liked the one I had previously but it only worked for one year. I will keeep hoping that they will be able to program the device.
Gratefully, Regina

reginaknits
New Member


Date Joined Apr 2011
Total Posts : 4
   Posted 4/29/2011 4:13 PM (GMT -6)   
Hi Everyone,
Thanks for your responses. Since I had a SCS before, my doctor did not think I needed a trial. I hope they will be able to program it. Right now, I have stimulation in my thighs, knees and the bottoms of my feet - nothing in my back. I wonder if anyone else has had problem with the programming.
Thanks,
Regina

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 4/29/2011 4:33 PM (GMT -6)   
Hello reginaknits!

I must have your missed your original post, and wanted to welcome you to the forum here!

The sad thing is, I cannot help you with the SCS questions you have. However, it looks like many of our members have come up with a few suggestions for you.

I'm sure they will continue to look for answers with you.

Hang in there, and good luck to you!

Again!...Welcome!


SEwink
Moderator Chronic Pain Forum

"The clock is running. Make the most of today. Time waits for no man. Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why it is called the present."

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/30/2011 4:16 PM (GMT -6)   
Hi Regina,
 
I had a successul trial back in February, and go in for my permanet implant surgery on May 11th. Do you have any idea where they put your leads? Any idea why the first one stopped working? Between swelling and scar tissue I'm wondering if that's part of the problem you're having. At least you know it's working, and that right there is a plus. It seems unusual that if you had your surgery back in March that you'd still be experienceing post surgical swelling. Do they have you on any sort of anti-biotics or anti-inflamatory medicine? Perhaps they just need to leave it alone for awhile till, like Laura said, your body settles down.
 
Keep us informed as to what's going on; I know Laura and I will be interested to hear how you're doing. I'll be joining the "bionic" sisterhood soon enough.  tongue
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Have seen several specialists; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 finally diagnosed CRPS - Stage 2
Permanently disabled, on Oxycodone and Celexa.
February 2011 successful SCSU trial
May 2011 SCSU implant surgery

Shadowforest
New Member


Date Joined Jul 2011
Total Posts : 8
   Posted 7/31/2011 10:32 PM (GMT -6)   
Hello Regina,
I'm 3 weeks post op.  They turned on my SCS last week.  I have the same problem, in order to feel itin my back I have to have it turned up and feel it all the way to my toes.  My Dr. told me they would reprogram after the swelling went down also.  It's hard to walk with the unit on,  I feel like Bambi on ice...lol
I'm playing the waiting game.  I get my stitches out the 16th.  5 weeks with them in.  Seems like along time to me. 
I hope that they get your programed correctly for you. Good Luck
Rhonda

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 8/1/2011 12:33 AM (GMT -6)   
Rhonda please note this is an old post and there has been no activity since the end of April.
Moderator Chronic Pain Forum

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 8/1/2011 2:30 PM (GMT -6)   
Hi, Regina, I am nini53/Kathy, which ever you prefer.  I have a Medtronics Neurostimulator in my lower right back.  After many tries, it does not work and is never going to work.
 
This is an isolated incident I believe everyone body reacts differenly to hardware.  So, at this point I would advise you to firmly have a rep. work with you before one problem becomes many.  You have to keep calling them, and nagging them to help you.
 
Maybe your pm doctor could help you in that area,  have your pm doctor call and get this problem fixed.  They respond quicker to doctors then just us  people who have there hardware in our backs, stomachs, etc.
 
I have a very large battery pack that is totally useless to me, but its mine they tell me.  So if you have need of an extra, I can give you the model numbers to see if they match yours and you can have it.  I have no use for it.  I would love for it to be able to help someone else.
 
Take care, and keep buggin them, call 5 times a day and more if you have to.  Good luck, how you a feeling well today.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 8/1/2011 5:23 PM (GMT -6)   
This is for Doctor Requiem_aeternam, although I am not a Doctor, I am also not a complete idiot.  I was not offering the piece of useless metal in my back.  I do however, have a equally useless battery pack not attached to anything, but since I bought the useless piece of metal in my back, it came with the battery pack that was at one time supposed to recharge the hardware in my back.
 
But thank you so much for clearifying things, just in case anyone thought I was going to rip this thing out of my back and give it to someone else.  That was never my intention.
 
Take care,
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 8/1/2011 7:14 PM (GMT -6)   
Again to the Doctor, yes I believe you are correct in your all you said.  I know my trial was totally usless by the second day, as the wires are not stable or under much of anything, one of my wires completely ripped out after I caught it on the door handle.
 
Also, the very thought of not being so dependent on meds. was so inticing, I wanted this to work so badly.  And the last, the pm doc I have at the time of my trial and then installation I had only been going to for about 4-5 months, after all the difficulty I have had since 2006 finding a good pm doctor, and keeping him/her, I was very eager to please.
 
Between those 3 things, I made a decision I knew was not right for me.  I really cant blame anyone but myself, so live and learn.
 
Take care, and thank you
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson
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