Spinal Cord Stimulator
 

Hi folks;

Well, in a couple of days, I will have a Spinal Cord Stimulator implanted to control the incredible pain I get from my neuropathy (idiopathic).

My test was very positive and I'm hoping that this will be the solution for 10 years of horrible pain. Just wondering if anyone else has had this done for pain? Any feedback?

Nancy-H

Hi nancy-h, no, but would love to hear about your results, when you can.

I had mine inserted just last Setember....It's awesome. It takes awhile for your back to heal though. Like most Doc's they downplay the seriousness of the surgery. Make sure you give yourself time to heal. You won't be able to turn it up that strong and laying on your back and even sneezing makes it "jump" up higher. We call it my cattle prod @ my house. The thing also has a "remote". The HDTV references abound. I can tell youthis it has changed my life!

Peter - I plan to report on the process so that others in pain can look at it as another option for them to try.

kithitter - Thanks for the info. doing things too quickly after surgery is my M.O. so I will have to make myself behave! Were you on different meds for pain when you got the SCS? I'm kind of wondering how long it will take to get off some of these meds that make me forgetful, sleepy, etc.

Thanks for answering my thread Peter and Kithitter. It helped me a lot.

Regards,
Nancy-H

make sure you search on it here and in www.hastypasty's braintalk (google for URL). I have heard that it never stops pain completely because you still need to take long acting opiates, but when sucessful you can take much less.
I have also heard that a high percentage of people get it taken out because it does not help or causes problems itself.
Lastly, some doctors over prescribe it thinking they can stop dealing with having to prescribe opiates. This kind of doctor often hasn't done enough studying and you should get a second opinion.
I was happy to hear that you got a test first to see if you would be helped by a SCS. What is the test?
Good luck
Jane

Thanks for the reply, Jane. My test was to actually wear the device for a few days to see how my body reacted. The wires only were implanted and the device was in a case that I wore around my waist on a belt. I had a good reduction in pain so I'm really hopeful.

I am using methadone also. It will be interesting to see what happens to my dosage. Tell me about Clifford Woolfe's nerve pain med???!!!!

Thanks again and wish me luck on Friday.

Take care,
Nancy

Does this work like a tens unit???

Hey all!
I normally hang out at the RSD page, but here I am lurking a bit. I've had my SCS for almost 6 years now. I love it. It makes life bearable. It never takes away all of the pain, but it definitely reduces it. It works exactly like a TENS unit- but internally. My little brother dubbed it my 'bionic butt' because my battery is in my 'hip'. Hip according to my doctors, but it's really your bum. I have had to have a bunch of revision surgeries because the wires can move out of place, but I went through all of the revisions because it was worth having the SCS in place rather than removing it. I could not live without it. I hope that it's as good for you as it is for me!
Linnie

I made it through the surgery!
 

Hi All!

Thanks for your support. Lynns409 - Thanks for your input, that really helps me when I'm in pain. I made it through the surgery but boy was I ever glad to have it over. I was awake way too much of it for my liking. I remember the pain I had when awake but none of their questions about the placement of the device. Then I was really hurting in post-op so the rep from the company didn't get a lot of the programing done because I was just in too much pain. I see her Thursday. (Hubby goes in for HIS pre-op's and gets his device, for lower back pain, on Friday.)

So today is Day #3 and I am very sore. I cannot twist, lift, bend or put my arms up over my head for 12 weeks! I've already broken those rules because you just can't help it.

I must go lie down now. I will check back in soon. I think it's going to be all worth it!

My best to all,
Nancy-H

Hey, just to give you some encouragement- You'll be back to normal after a month. It doesn't take as long as they say. Just no sudden jerking motions! :)
Linnie

My Surgery Bombed!!!
 

http://www.lil-abner.com/images/joebfstplk.GIF

Is anyone else old enough to remember The 'Lil Abner comic strip character, Joe Btfsplk (pictured above)? He was a good guy and friend but also the world's biggest JINX! Well, when it comes to my neuropathy, he must have been in my neighborhood and close enough to jinx me.

My doctor has NEVER had the implant move after surgery. I was soooo careful but I knew something had happened because by Day #4, the only stimulation I was feeling was around the little system "do da".

Turns out that my "swayback" (lordosis of spine) caused the movement and now I will have the surgery redone by a neurosurgeon. (Just the leads will be redone.) He will drill a hole in one of my lamina (part of the spinal canal's bony roof) and thread the leads through that hole. They will be placed on some special pad to protect the spinal cord and then attached to the the little system do da.

Naturally, I was stunned and upset but this way it will be done to last and last and gives me a better chance of having the stimulation reach down to my toes.

This is now getting interesting! Will let you know when the surgery will be.

Later,
Nancy-H

I just wanted to leave you a hug Nancy-h. :hug:

i actually just had my scs implanted march 7 and i love it so far makes life

bearable. my trial was also very successful and my all time goal is to b able 2

stop with the meds as well. i am very young so i am healin pretty quickly but

like they say just give it time 2 heal cuz u dont want the leads 2 move the

painful part for me is where they place the battery is super sore. what my

drs have said is that u have 2 give the whole unit time 2 scar into place so

thast my words of wisdom if u can call it that. lol i hope all goes very well for

and keep us updated cant wait 2 hear how r life will change for the beter for

u. in my thoughts and prayers

Still waiting
 

Stacie;

Thanks so much for writing. I had my surgery, the one that failed, two weeks before you and the area around the stimulator is still sore from time to time. I see the neurosurgeon on Monday but don't know yet when he will schedule me for the "fix up" surgery where they will restring the wires through a hole in a lamina before hooking them up to the stimulator. I am very frustrated because my pain is worse. I've been waiting since SEPTEMBER to have this surgery. I finally have it over 6 months later and my stimulator moves 2 days after surgery. Arrgghh

Take care,
Nancy

Oh Nancy!
I am SO SO SO SORRY! All I can say is hang in there with it! I can't even tell you how many revision surgeries I've had because my leads have moved (I have 2 of them). And they finally gave me a laminectomy with one of them, and I just have a big *** anchor for the other one. So think of it as you're saving yourself a few surgeries by getting the laminectomy lead NOW, instead of later, after the lead has slipped a couple of more times. I know that's sickeningly optimistic, but it really is true. There will be a bright light at the end of this dark tunnel, and this will change your life. Just try to hang on until it can happen. But sometimes, when in doubt, turn to bribery. The scheduling girls at my doctor's office LOVE See's Candy truffles, and I know it. And that gets me better surgery times. It never hurts to try. And it never hurts to be pushy with your doctor. I know that as women we're nicer than men and sometimes don't push as hard for what we need. Make it clear that you NEED this to live. Be firm. It can't hurt, right?
I truly hope this helps you! And if you need any advice or encouragement, feel free to PM me!
Linnie

[QUOTE=Lynns409;225974]Hey, just to give you some encouragement- You'll be back to normal after a month. It doesn't take as long as they say. Just no sudden jerking motions! :)
Linnie[/QUOT

I am new to this forum but am so glad I found this thread. I am going to have a SCS implant on May 14th. From what I have read here there IS hope from this chronic lower back, rt hip & thigh pain.

I went through with the SCS trial implant and it was the longest, most painful week I have ever experienced. I couldn't wait for the tech to get the thing out of my back!! I could manage the tingling sensations but however they had me hooked up did nothing for my chronic hip/thigh pain. When I asked why I didn't get any relief, just increased pain, I was told by the implant Dr. that they couldn't perform miracles and walked out the door. I felt hurt, let down, and then just plain angry. I would never recommend this procedure to anyone without extensive prior discussion with the Dr. Even then, don't get your hopes up too high.

Hi everyone I'm new to the boards so I decided to surf around a bit and came across these posts. I was wondering if you all still had your SCS? I recently moved to a new state and my WC of another state has denied me twice for the SCS implant. But, since my old doc recently had a new MRI (mylogram) done and found several nerves impinged that are not being reached by the medication they want to try the Stimulator on me. My WC analyst thinks that they will re investigate this option and have sent me to a neurosurgeon to see if surgery is an option which it is not. So, my new doctor is going to push for the stimulator and I am Hoping and praying that we have a decision by march of this next year.

A little background on me; I'm a 44 (almost 45 ohh crud next month) year old gal grew up in Wyoming all my life. I married my current husband 12 years ago and he has been a god send as far as being supportive with my pain. He takes me to my appts, and everything. I messed up my back at work 8 years ago while transferring a patient (I was a CNA) and caused three herniated discs in my back. Needless to say in Dec of 2000 I underwent the first of many fusion surgeries a two level fusion that was successful for the first two years I did quite well. In 2002 the disc above L3-4 herniated fully and I went under the knife again to fix that one. Got 6 months of pain free freedom out of that surgery until I was planting my strawberries and felt excruciating pain down my left leg. Immediately called my neuro who got me in and after doing tests found that the fusion did not take and that one of the screws had come undone. So then back in we went for a revision but this time when I woke up there was no relief. My left and right legs hurt bad and my neuro said that the surgery failed and that I was stuck with my pain forever.

Sorry for the long post. I'll post more later as it is time for a hot bath and some meds :-)

Ok so.....
 

Then I have a few more questions. My sister-in-law has one of these and she has had her's for several years (just got her first 7 year battery replaced). My first question is; is it true that the doctor takes you off all pain meds before the trial? or before the implant? If so I have been on my pain meds for the last 5 years straight and I am really worried about withdrawls. How do I control this?

Secondly; I understand that you are awake for the trial. But are you awake for the actual implant? If so how painful is this to handle? and how long is the surgery?

Third; I am only expecting a 30 to 40% decrease to my pain is this a viable expectation?

Hi Scared 4 Life
 

I have had one and I did request to be put asleep. And thats what they did. I have had other things done since this, even surgeries and I didn't feel a thing. To tell you the truth, you don't hardly remember it. They use a drug called versaid (not sure this spelled right) . I even watched the last surgery so don't let that stop you, and I felt nothing. Relax:hug:
Fancy:)

crps level1
 

i just got scs mon. contact me **

Spinal cord stimulator feedback
 

hello folks,

Well where do i begin...I to have had the SCS implant about 3 yrs ago. The Dr. told me it was my last option. So I went through 2 trails. the first one had complications, the second one gave some relief. So I went ahead with the permanent implant. Unfortunately, within a few weeks I was in the Drs. with major complaints. The rep from the SCS company tried to make computer none surgical adjustments so that the stimulation could reach the right areas. It was reach all the wrong areas. Well I met with multliple reps 8 times within 3 months and all they(Dr.too) would say was to go home and try the programed settings on my own. So I did what they told me to do.Things became worse! I started getting debilitating external and internal burning and pain down both of my legs, and back. Weakness in both legs. The Dr. scheduled a surgical adjustment for the leads. By the time of that surgery he was doing a emergency removal because my legs gave out. I have been in a wheelchair ever since and can not walk. Still experiencing horrific pain. You see I was walking before the implant!

Hi dajo~
 

I didn't like mine either, and had it taken out in 1 yr by another doctor. I don't usually talk about it anymore, because nobody want to hear about it. I must admit your problem is the worse I've heard of tho.

I had a Rep from hell that wouldn't come and adjust mine at all. he finally sent another person, but it didn't do any good. It a rare case when you hear of someone that likes the scs. Sorry you had so much trouble.
Fancy:)

My SCS
 

I wanted to add my experience. I suffer from permanent S1 nerve damage after 3 back surgeries at L5-S1. The nerve damage actually occurred prior to any of the surgeries because I waited a mere 5 months to get medical treatment (thinking I could go to the chiropractor and think positive and would get better.) Sometimes people have years before they will have nerve damage, and for others, just a few months. That was me.

Anyhoo....I got my permanent SCS on 1.5.09 and my life has changed. I have lost 22 lbs, can go and do anything I want, can drive 8+ hours and travel, you name it. My body is finally getting back in shape after being reclined 23 hours a day for last several years. The S1 nerve is affected by sitting, standing, walking - really movement of any kind. I had burning/searing pain 24/7. With the SCS, I still have pain, but it is different. Hard to explain. I still do not bend, lift or twist. I have "grabbers/grippers" all over the house to pick things up for me when they fall, since I DO NOT BEND. I do not do a single thing that would cause my leads to break free of the scar down and move. Trust me on that one. But still, I have my life back. I was reclined in a chair for 23 hours a day. The fact that I am up and moving is a God send.

If you have ever sat in a massage chair at a salon, imagine being your own "massage chair" on the inside. That is what if feels like to me. I have buzzing/tingling from my buttocks to my toes and it is the most comforting, awesome feeling in the world. Beats 24/7 burning pain any day. And I am one of the lucky ones that can turn my SCS up just right and get a special reaction, the big "O" that so many nerve damage sufferers lose the ability to experience.

I am still on my long-acting meds, but barely take any breakthrough meds or muscle relaxers anymore, so that is a big decrease in meds for me. I believe we will try to decrease meds overall very slowly. When I turn off the SCS, I have that burning/searing pain. Therefore, I keep the SCS on 24 hours a day.

Regarding the 6+ weeks after surgery. When they say no bending, lifting or twisting, that is IMPERATIVE. You MUST NOT do anything - no lifting arms, NOTHING. My husband shaved my legs, helped me dress, fixed my hair, whatever I needed because I was NOT moving until those leads scarred in place.

During my trial, I came home and in the first day my leads moved down 1 inch, and I didn't even know what I did that caused that. So with the permanent, I seriously did not do a single thing that could possibly move those leads. 6+ weeks of being super careful is SO worth it!!!! Trust me!!!

When I had the trial and permanent placement, the docs (2 different ones) had major difficulties due to scar tissue and what my neurosurgeon calls an "anomaly". I was just glad when they found the "sweet spot" and I was a walking mummy until it scarred in. Even raising your arms ONE TIME can cause the leads to scoot down out of position. That part is frustrating but getting the pain relief is such an answer to prayer if you focus on that it really is doable.

I have the ANS/St. Jude Eon Mini and am very thrilled with it. My pulse generator is implanted in my upper right hip and the odd thing is that I was already numb in that location (I have lateral numbness from hip to toes) and I had no recovery pain from that at all. Totally unexpected and weird. lol

Side effects I have are some nausea if I turn the SCS up high, it is an appetite suppressant (we think) and I eat small meals, much like I imagine a "skinny person" eats normally. lol I am also possibly having bladder dysfunction, although I had this PRIOR to the SCS. We are investigating that more now. Sometimes my bladder just doesn't seem to know how to pee - I have to employ my abdominal muscles to empty my bladder. But like I said, I had this BEFORE the SCS. Just don't know if the SCS is aggravating it, making it worse, etc. If I were to lose all bladder function and have to wear diapers, I am unsure if I would remove the SCS. That is how much pain relief I get. I NEVER want to return to the 24/7 burning pain ever again.

One day I went to turn on my remote control and it acting up and I almost had an anxiety attack. People, I'm telling you, when you find something that relieves this horrid pain, you bond with it!! lol Thankfully, it just needed new batteries.

I feel very blessed that I was approved for this pain management device. I haven't been cured and I'm still on meds, but I'm just fine with that, as that was my expectation. I knew that going in. But to be 42 years old and get to act 42 again rather than 95? Priceless.

Take care,

LovelyIris:D

Hi. I just wanted to say thank you for your post. I just had the leads from my trial spinal cord stimulator removed today. I was on the fence about having the surgery to have the permanent one put in only because they couldn't get the main area that I needed relief in to be able to feel any tingling or anything. My L5/S1 and L3/L4 discs are herniated and that is the main area I wanted them to target. Unfortunately, they were able to get above and below that area, including down into my legs, just not that one spot on my lower back. They explained how the leads with the paddles would have much more specific coverage, but I was still worried that if I have the surgery I won't get relief exactly where I need it the most. Your post at least lets me know that there are people out there getting relief from it, so what do I really have to lose? It can always be removed if it doesn't work for me.

Thanks Iris !

I know that we are all different and what works for one might not work for everyone, but I dream about a solution like this that could take the edge off. Thanks too for stressing strict adherence to the no bending/lifting rule.

Versed! wooo! I love that ride.

I had a SCS implanted after an L3 L4 fx of my back. back pain, leg pain and an increasing morphine prescription led me to allow them to implant it. My legs buzzed, my back ached, and the rep kept trying to help me adjust it. It wasnt fun, and it was stressful. I was in worse shape with the stimulator than I would have been to just take the morphine. After a few months of trial and error and incredible frustration I begged to have it simply removed. My quality of life took a dive, and I spend more time in MD offices, hosptials, and clinics than I did on my own couch. it just wasnt worth it. Some said "hang in there, give it a chance." or "you just need it adjusted correctly" or "let us do more surgery to replant the leads YOU must have pulled them out of place" I was fed up, and gave up.

they told me the lower Lubar region is the hardest to provide blocked pain relief for, as its at the end of the spinal column and very little room to wiggle in.

I went on a run of learning massage techniques, meditation stuff, relaxation stuff, and I am still on a maintenance dose of MS contin. Life is MUCH better, and its because I took the wheel and turned my life in a new direction. AWAY from the advice of so many others. It works for me, and thats I could ask for.

Hi My leads moved during the trial too. But the rep. has told me when I have my surgery implant they are going to put the lead up higher so I get better coverage. In surgery they are going to attach to lead to my bones in a few spots so they don't move so easy. It''s an laminectomy. My will be made by St. Jude.

Stimulator
 

Nancy,

I had the temporary stimulator installed and it was absolutely wonderful. I experienced 80% pain reduction within 2 days. Where mine went wrong is the doctor did not get the permanent one in the same location. Right now my pain is as bad as it was before they installed this, almost $200,000 piece of equipment. I have had it adjusted 5 times and still cant get the relief I had before. This stimulator is a crap shoot really. The doctor doesn't understand why I can't get the relief I had before so it is an ongoing battle. I know this probably doesn't help you much but just know your not in this alone.

scs trial
 

Does a scs help with si joints