Anyone who has had spinal cord stimulator
 

I'm looking for anybody who has had a spinal cord stimulater inplanted, or anyone who has heard of it.
I am in a lot of nerve pain and my doctor has suggested this for me. I've done all the other steps in pain management.The next thing is to get the spinal cord stimulator or surgery for disc replacements.
[B]I would love to speak to anyone concerning these topics[/B].

Hi Stacey ~ I had the SCS implanted for 6 months, but then had to have it removed.

I went thru the trial period, but the dopes (pardon) gave me so many restrictions on what I could and couldn't do that I didn't get a good assessment of pain relief. During the trial, of course I thought I was getting good pain coverage, cause they didn't let me really DO anything! :rolleyes: So I went ahead and had it implanted. After the healing period, I went about my normal routine and WOW ~ it hurt like the devil!!! The SCS just irritated things instead of covering the pain. I had it reprogrammed many times, but no soap. Also, since I wasn't a very big person, the stupid generator tried to work itself out!!! UGH. I had to hold it in with an ace bandage! LOL. So obviously, it had to come out, and believe me that's work taking it out than it is putting it in cause scar tissue has formed around the leads in the upper back and around the generator. I still have a very sensitive spot in my upper back and I imagine I always will. :rolleyes:

:mad:Sorry, but my stupid computer posted this before I was done. Anyway, they never told me you had to be a certain 'weight' or have a certain amount of 'fat content.' They should have LOOKED at me before implanting it! :mad: They would have been able to see that I was too thin. Then the idiots wanted to try the morphine pump on me, so not knowing anything, I said sure! It was WONDERFUL and I got TOTAL pain relief!!! Then they said i couldn't have it cause it's 3 times HEAVIER than the SCS! What idiots! It's almost laughable! :p

Anyway, that's my story. If you have further questions, let me know. The surgery is a cinch. No problem. God bless and take care. Peace, Lee :)

Hi Stacey
 

A new forum specific to SCS Implants was just created last month
Here is the direct link to the SCS and Pain Pumps forum
http://neurotalk.psychcentral.com/forum118.html

I just had my stimulator implanted a week ago and it helps alot with the nerve pain in both legs. They also programmed it to cover my lower back as well, even tho the pain there was minimal. But the constant burning leg pain is what has taken 5 years of my livelihood.
It is a big decision and must be weighed very carefully, but it has helped many people get their lives back.
Do alot of research B4 making a decision. But the good thing is, you can do the trial implant to see for yourself if it will target your particular areas. I would encourage you to at least do the trial.
Feel free to pm me with questions.
Best wishes
Rae

day two with the stimulator
 

Hey there,

I got the trial stimulator put in yesterday, so maybe I could fill you in on how it has worked for me so far. Again, this is only day two, but so far I am happy with it. It is true that the limitations are pretty strict during the trial. No lifting, no bending or twisting. Basicaly, they want to keep the lead stable because it hasn't been firmly attached yet.

Anyway, I just wanted to know that I could walk and stand for more than a few minutes. I have lower back and hip pain that is high level and chronic. I have been almost bed-riden for a long time. I am pleased to tell you that so far I have been able to back off my meds a little bit on only day two, and if it weren't for the surgery site pain, I would be backing off the meds even more.

I actually went outside and walked down the sidewalk just to the next house, but that was something I would not have been able to do before the implant. I am scared to believe this is working, cause everything else has failed, but I told the implant rep to start the paperwork for thr permanent implant.

I'll keep you posted if you want, and if you have any questions let me know

I had my SCS implanted in April 09. It does work for the nerve pain in my legs. I am not a light person and my generator still sticks out to the point of uncomfortable. I have had two surgerirs since the implant on it. I just fell and ripped the internal stiches and will be undergoing one more to repair them. I dont know if I had it to do over with if I would implant it but, I hate since going through the surgeries and it does work for the pain to take it out. I guess I'll just have it repaired. Do lots of research before making a decision. I had never had back pain before the surgery and know it hurts worse than the RSD did. My thoughts and prayers are with you as you have to make this difficult decision for yourself.:o

I might have what you are looking for
 

I used a device after one of my spine surgeries (Lumbar fusion with instrumentation) that was intended to stimulate the spine and the bone graft. Is that what you are looking for? I'd be happy to see it could help someone. It cost me over ten thousand dollars and didn't work in my case because I developed other problems it was never intended to correct. If it might help you, you are welcome to it. I'm just not certain based on your description if we are talking about the same device....I think mine is made by OrthoLogic and its called a SpinaLogic s/n 7008909 let me know. Good luck.

Have SCS
 

I had my SCS implant feb 2009 and I love it, it has been a God sent to me. I have had back pain for 30yrs. This is the only thing that has worked and given me my life back without pain. I throught I was going to have to go on disability. The only thing I would do different was to request the charger be implanted in my stomach. It would be easier to get to and charge. Best of Luck Donna:)

I have an implant for almost 4 yeras is not working I'm still in lots of pain and on top of that i can't have any MRI done .do not have it implanted.

should I or should I not
 

gcardcor

Please don't hold back tell me how you really feel about the SCS. Kidding really if you could give more insight as to why it did not work for you. More info would be great like where was/is your pain what kind of pain nerve, bone, muscle, ect. Did it do any good as far as relief what so ever or were you expecting more from it. Did you Dr. over sell it to you.

My Dr. is trying to hard sell me on have this done, but after what a TENS unit did for my nerve pain I am very concerned as to how this will react with my nerve problem.

So any more information as to why it did not work for you in more detail my help many more people here on this forum that just mite help them with the same pain problem that you still have.

Hi
This is my first time on the forum. I live in Dublin Ireland. And on the 5th August 2010 I had a Spinal Cord Stimulator implanted. This is a result of my Failed Back Syndrome. Ive had a problem with my back since Feb 2005. Ive had a disectomy, 2 Spinal Fusions, and then the metal removed but still no relief. Ive now been left with neuropathetic pain down my left leg and some of my right leg. Also a 'heaviness' in my lower back, Unfortunately, the surgeries I endured were of no benefit whatsoever. In fact, in hindsight it was the worst mistake of my life.
So I was sent to a Pain Management Clinic and my Consultant assured me that I would benefit from an SCD. It took over 2 years to get to the point where the Stimulator was implanted. Because you have to go thru other pain reliefs and then to a psychologist to assess you before they will implant.
So I have mine implanted now just under 2 weeks, so far so good. At present Im still having pain from the wounds where the implant took place. But overall I find it very relaxing. It is helping me somewhat. Im unable to be very mobile for 6/8 weeks until it all settles down so I cant really say if it is working to its full potential. But I will say that it relaxes me. It is definitely helping with some of the pain which I have in my leg. but I need it to be tweaked to make the signals go to my lower back some more.
I would say make sure you are well informed. Check out all the literature that is available. I was given a dvd and a book explaining the whole procedure and what to expect. I also had to go thru a trial to see if the stimulator would be beneficial.
Not sure if that is of any help to you. BTW where are you from?

Jackie

Welcome Jackie!
 

It's so good to have you!

I see you found your way to the SCS forum, so I'll see you over there!
I've had one in for 5 months and love it!

Rae
:hug:

spinal cord stimulator
 

Hi Jackie,
I live up north, Belfast, I would like to know about the spinal cord stimulator.


Trevor

Recovery time
 

So all those who HAVE had one implanted...how long is the recovery time? I mean really? How long before you can lift and stuff. I have two small children...2 years and 4 months. I can't just NOT care for them. However, the pain is getting worse and the blocks and junk aren't helping. The doctor really wants to try this, but I can't seem to get any clear answers in my hours of research.

Hello Trevor and Puppyraiser8!
 

Welcome to NT!
I just wanted to let you know that we have a very active forum here specific to SCS/Pain Pump discussion. Here is the link to get you there:

http://neurotalk.psychcentral.com/fo...ysprune=&f=118

Hope to see you over there!

Rae
:hug:

ahh the questions and frustrations!
 

HI!...new here. Just had the trial sps put in yesterday. I am diagnosed with lupus, hashimotos, ra, degenerative disc disease and stenosis, had a laminectomy, disectomy, and lumbar fusion. I have been working with pain medicine for too long, and had really good results with pain medication. I was able to go about my normal routine until the pain medicine folks started acting like everyone with chronic pain problems were just drug addicts. No one likes to take the stuff but, after the morning dose, I was in pretty good shape. Thus the trial of the sps. So, I know from the MRI 3 months ago, that the area above and below the fusion is a mess, and a new cyst has grown around the nerve bundle. There is also cervical degenerative disease. My problem? I don't see a huge difference from the sps, and if pain meds were doing the trick, why go for more surgery. If it looks like I will need more back surgery, why permanently put the sps in, if it isn't doing all that much...after much reading, I have read that more of the folks dealing with auto immune issues have such trouble after sps surgery. ...honestly, I am so disappointed with everything. After serving 8 years in the Navy and 3 in the Guard, then being a hospice nurse, I'm just stuck, doing nothing..just because of pain. The temp sps comes out Friday morning, and I just don't know what direction to go. More than anything, I just wish I had a doc that would listen!! They all keep leaving because of the constraints on pain medicine now!

Hi Leesa,

Please tell me more about your surgery to remove your SCS. I have been told that I should have mine removed. Mine caused a whole new set of pain. I too am very thin. Were they able to remove the leads totally?
Thank you.
Suzanne8

Hi Suzanne ~ Yes, the leads were removed -- everything was removed. LOL

Taking the SCS out was a little more difficult than putting it in, because scar tissue had developed around the leads and the "generator." So it took a little longer, and I was a little more "sore" afterwards, but it was nothing serious. I didn't have any big problems afterwards, although I STILL have a sensitive spot in my upper back where the leads were --- if it's touched, I get a "zing." LOL It's undoubtedly from scar tissue.

So don't worry about the removal. It's really no big deal. You'll just want to rest up for a couple of days, and after that you'll be okay except you'll have the PAIN to deal with from the original injury -- but I'm sure you expected that, right? :rolleyes: I sure wish they could come up with SOMETHING for this darned pain! Best of luck to you Suzanne! God bless. Hugs, Lee

spinal nerve burning
 

hurting, have you tried the thing that is like nerve burning to stop the pain? I had it done on my shoulders a couple years ago and it worked at c2. the disease I have now has spread to whole body to where my neurologist has sent me to a doctor looking at putting in 2 of the spinal stimulators at one time! if you have not tried the nerve burning, i'd try that first! i'm looking here too about these spinal stimulators, I'm scared about one unit let alone 2 units. I about to the end of the meds i can use to stop my pain. I have masses that are inoperable, and I have been on chemo for 2 years. all from uncle sams anthrax vaccine.

Hi,

My father has a SCS, he has had it for over 8 years now. This past Saturday he was brought into ER because it was malfunctioning and go stuck in the on position. He was having difficulty swallowing and urinating and getting other shocks throughout his body. Long story short, he met with his neurosurgeon and they turned everything to off, but now is waiting surgery to have it removed in two weeks.

He loved it up to this point.

Good luck with your decision.
Cathie

sounds aweful..... i am seriously reconsidering..... I have not done trial or anything yet....

I had my permanent implant a week ago today and have experienced complete elimination of neuropathy that I have lived with for about 20 years. I have my follow up appt. today. You don't have to make a decission right away. Read everything you can get your hands on.

The scs/pump sub board is an excellent resource and the folks are real supportive. Keep in mind, the info. the doctor and device manufacturer give you will be the "best case senario". Do your own additional research, make a list of questions for the surgeon and if he/she does not answer them to your satisfaction, move on. Best wishes.

I am on my SCS Trial day 1 (insertion day was day o) as I am sitting here with my neck brace trying not to move my neck. The leads move quite a bit that's why they say no bending your neck. I find if I do bend my neck or lift my arms overhead that the intensity of the stim changes which is a bit annoying, but it is working great. I am really pleasantly surprised that I barely notice my TOS/CRPS burning/vibratory pain. In fact, I would say it has brought my pain down to a 3-4 which is kind of unbelievable. The mechanism is that the pain nerves are distracted by the stimulation so that the pain impulse does not go up to your brain and get sensed. I am not wanting to take any pain meds during this trial except for the area in my back where the leads were put in (it is covered by a bandage and alot of gauze and lots of Tegaderm).

Sometimes the stim will suddenly get stronger because I turned my neck and then it is bothersome. Apparently, there is a new stim with a higher frequency being tested in clinical trials in the U.S. right now that has a smoother sensation that is less "noticeable" in patients and that also relieves the pain actually better than the current ones on the market. My doctor told me that one is at least 2 years (2014 or 2015) away from being available to the general patient population.

They say that during the Trial I cannot get the area on my back where the leads are wet so no showers or baths. Only sponge baths (wiping with a damp cloth). I am trying to figure out how I am going to wash my hair because also if you lift your arms above your head the stim leads will kind of move. The Trial is only for a week, actually 5 days for me. I guess after the permanent one is put in, you have these same "position" restrictions for one month except that you can take a bath/shower because they are waiting until the leads scar into a permanent place. Apparently the leads can get no higher than C2, so that is at the low neck, so if you are having pain on your face or head the stim will not cover that area.

There are different programs that the Rep programmed, some are a steady stim, some are kind of cyclical patterns. I find I like the low steady stim better. But its nice to have the different options. When I slept, I turned it way down to almost zero.

I'm really hopeful that this will allow me to eventually slowly go down of and eventually off of the Opiates and Powerful Nerve Pain Meds that are making my mind cloudly. It is because of the mental changes that I cannot work now. I will have to study and retrain for a career which will take years. The 4 years I have been on Opiates my mental capacity has gradually declined, I have a horrible memory and I am dumb. I have heard that brains actually physically shrink (as well as diminished brain function) in people who are on Opiates for a long time.

I am also not a fat person (my BMI is 22, which is the low end of normal range) and the Operating Room staff and the Device Rep kept commenting on how "skinny" I am. I am not skinny by my standards, I wear a size 2 and a size 26 or 27 jean and am 5'5". But the doctor did say that the battery would probably be palpable and visible on my body. The doctor said that the area where the battery is put in, the "pocket", is going to be the most painful part of the permanent procedure. He said that if I wear a two piece bathing suit, it will show like a cardiac pacemaker shows. I am hoping for the permanent one they can place it on my tummy too, not my flank. Right now since it is the trial, the battery pack is outside of the body on a belt that I wear with a velcro closure.

Well feel free to PM me if you have any comments or questions.:) I'm so hopeful now that it has made me and my S.O. very happy today! Emotionally inside I feel like jumping for joy. (but I can't right now!)

Howdy Ner
 

Prayin here your trial will produce the endgame result you are seeking! I am a two and a half year post op permanent stim user, and I am happy with the whole package.

Post op, I fully withdrew from all opiates and nerve medication, now being med free and practicing my profession joyfully doing what I can to help people [One of the greatest pleasures and blessings of life, helping others]. Absolutely, during the med use, I felt as though dumbed down, an inescapable phenomenon associated wtih medicinal pain management. So, during that time, my professional contacts were pretty limited.

Now, being free of the chemicals I am in a dead heat to expand the reach of my licensing so as to better serve clients. This I throw in by way of indication if five plus years of the meds shrank my brain so as to permanently dumb me, flexing it once more may have the opposite effect!:D

Post Op pain? Inescapable. What is worse? The whole of the path to insertion of the foreign body into my own. There was the pocket pain of creating and filling the surgical pocket which now bears my stim generator. There was the laminectomy pain of the thoracic location where the opening was made and used for the insertion of the paddles into my spinal cord space. But wait! There was more..... that route of the cable which ties paddle to stim generator was not without its pause. It was bothersome post op..... Even so, what about surgical pain??? Well, being 34 surgeries experienced as a patient who is humpty dumpty reassembled after a car wreck, I feel surgical pain has been worth it. Such pain tends to be transitory- here today and now, but gone once healing sets in. The most important thing for me was realizing via the Trial use, a means did exist to help overcome the pain which had BOUND ME TO MEDS AND BED.

It feels so good to be active professionaly again! To experience social interaction AGAIN! To be free from the beast monster of intransigent pain because it is managed by my stim.

Does this mean I am healed from the original pain? Oh no. When I turn stim down low I know the monster lives, but the stim masks the pain without the consequent dumbing of the patient.

So, for you I pray all will be well Ner,
Mark56:hug:

I had my permanent implant about two and a half weeks ago. This was for assorted lumbar nerve pain to include bilateral sciatica. The nerve pain is completely gone. I have other pain issues that it does not control but I am thrilled to have the nerve pain out of the mix.

We are all different and respond differently to the various treatments. I hope this works for you. Hang in there.

Spine

My pm wanted me to get one and I wanted to wait until after I got new MRI, etc. he agreed.

I can say that when he was advocating for it he said that it either works or it doesn't. If it works it can be to varying degrees. So I said anything goes and laughed. He just smiled so I'm not surprised to see such varied responses here.

I would reckon that's why there's a test period prior as well as psych evaluation, etc.

Whatever you decide, I wish you well. I have a feeling I'll be right where you're at in this decision sooner than later.

I had a dorsal column stimuklator for phantom facial pain, and trigeminal neuralgia. It helped about 85% of the pain gone.
Unfortunately I lost it to an infection unrelated to the implant. had a second placed in same place with no benefit. I also lost that to an infection, again unrelated to the implant (had friend with staph and think caught it from him) and because other surgeons had been in same area could not have a third.
I now have a totally experimental implant (they are not doing it anymore, I am 13th in country to have it sensory cortical) that failed a few months back.
I have had it since 1991 and untyil it failed I was unaware of how much benefit I was getting from it.
I am not a medical person but because I had good benefit from it, and because it is relatively benign (my understanding of it) I recommend considering them.

Spinal cord stimulator
 

I've had the spinal cord stimulator for a month now, frustrated that it doesn't seem to work as effective as I want it to. I've had 3 back surgeries due to the Tethered cord syndrome, I have burning pain to both my feet. The trial seemed to wrk for a few days, so I decided to get the permanent done.

Dont give up
 

It takes time to find the right polarities, amplitude, pulse and width as well as cycling, if you do that, the best amount of time on vs. off etc.
I understand the frustration, because you want it to work immediately (I did) but it can be worth the patience and effort to find the right combination for you.

I am thinking of getting a SCS, too. I have fairly good mobility. I stand, walk, amd do daily chores. My problem is mostly abdomen. It hurts to sit and I can't tolerate car rides. I am female and usually wear dresses. Certain fabrics in clothes bother me. Can SCS help for this sort of pain?

Also, I am small and weigh 102 lbs. I do carry my fat in abdomen.

Boston Scientific Nerve Stimulator implanted
 

On July 19th I had the generator implanted on the left side of my abdomin. The incision has healed properly, but the generator still moves. Sometimes it under my ribs and sometimes it just protrudes out of my abdomin. Has that happened to anyone? What have you done to keep it in place?

spinal stimulater
 

I had one implanted in my hip and attached to my nerved in my mid back area. After about a year a lump develop and along with it came pain. I was told that I needed the terminals changed and the lump would go away. I had the stimulator removed and the lump is still there. I hurts worst ten ever.

I had the SCS Implanted also, and it took a year and a half to try to keep that thing in my Body!!! before my body rejected! Up on my left side of my back I developed a goose Egg, about the size of a golf Ball!! it stayed there for about 6 months, then the skin kind of peeled off like a Sunburn if you will, and then another layer, and another layer, and another until there was a whole about the size of a q-tip. it drained fluid liquid 24/7 clear, no smell we had tested several times for infection but nope it just kept draining, I could stick a Q-tip in it all the way to the end of the q-tip???? Dang! and then where the power/Battery was it turned black???? yeah you guessed it, it started to peel, and then one morning I woke up and I could see the battery silver thingy! my skin had torn open and was a hot mess! Yes can you say emergency Surgery????

Nope! my body rejected mine after i got that lump! after a while your skin will peel at the top of that lump! until you finally blow a whole! and from that whole you will drain fluid! it will stay a whole, until they cut it and stitch it up and REMOVE those leads! they did (3) revisions on either the incision in the Center of my Back to either the one in my hip area because they never could get one or the other to really heal, and when they finally did, that is when I got the lump, and then it did not heal for a year it drain 24/7. and then the battery ripped out of my hip while I was sleeping... but you know what as soon as they took all of it out my body healed up in a week! but for a year and a half, I had one area or the other not healed????