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Need Info on SCS

AnonymousUserAAnonymousUser Posts: 49,731
edited 06/11/2012 - 8:23 AM in Pain Management
All,

Been reading through your posts on the SCS neurostimulator. This is news to me and I'd like to know more about it. I'm 3 years post op after a lumbar fusion on L4-5, and L5-S1 with instrumentation. I have permanent neuritis and scarring on both my left and right sciatic nerves and struggle with chronic pain which goes through periods of better and worse. Most of my pain is nerve related.

I consider myself blessed compared to what others have endured, and try to keep a positive perspective on life. Can anyone tell me whether or not this sounds like I should talk to someone about SCS? Who would that be? Are there only certain physicians who one should talk to about this?

What is it like to live with the SCS? Do you have electrodes sticking out or something? Can someone point me to some online resources?

Thank you. God bless,

David
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Comments

  • Welcome,

    Here are two SCS sites you may want to look at:

    controlyourpain.com
    This is for Boston Scientific Precision Plus SCS, It also list PM and NS docs (by zip code) trained and certified for these surgeries.

    medtronic.com
    This is the other site for SCS.

    ANS is also another brand, not familiar with them.


    The SCS is a very helpful system prescribed for the management of chronic pain. Once your doctor believes you are a good candidate you will go through 3 major steps.

    Psych evaluation - to see if you have a support system and to see if you can follow doctors instructions.

    Trial Stimulator - usually a day surgery in PM doctors office. You will have this for a period of time decided by your doctor (usually 5-10 days) and take notes on your pain relief while you have it. Doctors need to know if you are getting significant pain reduction. The Trial SCS does have the generator box outside of the body during this time. Follow instructions from doctor and manufacture representative for care. ie: no shower or BLT during his time.

    Implant - This is a permanent implant done in the hospital by a NS doctor. Usually an overnight stay and healing period of 6-8 weeks in most cases. Depends on what type of Leeds and cervical or lumbar implant. NS doctor will tell you what to expect with surgery.

    I am very happy with my implant done 8/12/08 and well worth the time to charge the unit and carry my remote control. LOL

    Good Luck, I hope this is the answer for you and you get a better quality of life.
    O-
  • I, too, am looking into getting a spinal cord stiumulator. I began my quest in May when my surgeon pretty much blew me off 'cause his surgery didn't work. The first thing I did was to call the Advanced bionic rep and he gave me the names of some doctors in my area who use their probduct. As I went to visit the various docs, they all wanted to do SO-SO-OO-O many more tests, procedures, etc. and by now I was distrustful of the motives of these docs. Do they really think these procedures will help or when they look at me do they just see an ATM machine? The SCS is a last restort treatment. Finally (and this is funny). my hair stylist used to live with a neurosurgeion at one of the nost prestigeous teaching hospitals in my state so
    I'm on my way. Many,many here swear by it. I plan to ask them to be my "buddies" as I move closer to my stim trial. David, perhaps you and I could keep in touch, too.
  • thanks for the replies guys. I really appreciate your time. Anyone else that has any info would also be helpful.

    David
  • to begin with, i started the trial in july, my pm used ANS,
    IT WORKED LIKE A CHARM, I HAD NO REAL ISSUES, IT COVERED MY
    PAIN AREAS AND SO I WAS READY TO MOVE TO THE IMPLANT.
    MY PM RECOMMED A DIFFERENT DOC TO DO, BECAUSE THEY DONT DO
    THEM HERE, I HAVE TO GO TO SACREMENTO.TH NEW DOC DIDNT TAKE
    MY
    INSURANCE, SO IT ANOTHER COUPLE OF WEEKS FOR MY DOC TO FIND A
    DOC WHO TOOK BLUE SHIELD. I DID FIND A NEW DOC IN SACREMENTO
    WENT IN AUGUST FOR A CONSULT, I TOOK THREE WEEKS FOR THEM
    TO WRITE UP CONSULT REPORT TO SEND TO THE INSURANCE TO GET
    PRIOR APPROVAL.FINALLY GOT A SURGERY DATE FOR OCT2,
    DR ABC (YES THAT IS HIS NAME) TOLD ME THAT THEY WERE GOING
    TO USE A BOSTON SCIENTIFIC, AT FIRST I WAS ALITTLE WORRIED
    BUT HE TOLD MY THAT HE FELT IT WAS A BETTER PRODUCT.
    THE PROCEDURE TOOK 1 1/2 HOURS, UNFORTUNATELY HE GOT A WET
    TAP. THEY DONT HAPPEN VERY OFTEN, BUT I WAS THE LUCKY ONE.
    I HAD A SPINAL HEADACHE FOR THREE DAYS, I DONT WISH THESE
    ON ANY ONE. AS FAR AS THE SCS GOES, WORKING LIKE A CHARM
    I VERY HAPPY SO FAR. I SAW DR ABC TODAY, HE SAYS THAT HE
    WAS WORRIED "SHOOTLESS THIS WEEKEND" THIS WAS HIS FIRST WET
    TAP IN 18 YEARS. I GO BACK TO SEE HIM IN A WEEK.
    IF ANY OF YOU HAVE QUESTIONS, JUST EMAIL ME I WILL TRY TO
    ANSWER THEM.

    CINDI

    Edited to remove Doctors name and wording
    Ron DiLauro , Spine-Health Administrator 10/08/08
  • When a SCS was first suggested to me (by the spine surgeon who did the fusion) I did some research and came away with the idea that the Advanced Bionics product had fewer problems. I'm told that the neurosurgeon who may be doing mine (if the trial goes well) would be using the Medronic brand. Does anyone know whether Medtronic has come out with a newer version of their device?

    Cinhoo--how long did you have to stay in the hospital?
  • Medtronic has come out with a newer version that has the capability to empower the patient to be more in charge of their own pain control. The model is the RestoreULTRA and the feature is called "TargetmyStim".

    On your typical SCS, only a doctor or a rep has the capability with their programmer to shift the actually contacts on the leads that are being used. This of course can dramatically shift the area of stimulation and pain control. Once this is done, the patient goes along their merry way for however long they can until they need some "tweaking" due to lead migration or scar tissue.

    With the "TargetmyStim", it allows the patient to shift contacts on the leads with their own personal programmer. Also, normal SCS features give the patient the ability to change the amplitude(strength) of the signal and some can change the frequency. With the "TargetmyStim", they can also change the pulse width. So basically the patient can "drive" their own SCS with less trips to the doc or the rep.

    I have built several programs into my programmer with this, and I can switch depending on what activity I am involved in. I really feel like I have a greater amount of control than many others who have an implant. I feel very fortunate. I was told had I gotten my SCS even 6 months earlier I would have not gotten the model with this capability.

    "C"
  • Hey, Welcome to Spine Health. I see that the gang has already begun working on answering your questions for you. Awesome!

    No electrodes sticking out, it's all internal after the permanent implant. I posted pictures of both the trial version and permanent version in another SCS thread. I'll see if I can find it for you.

    Since I've never been the one to approach a doc and say "hey can you give me an SCS", I have no idea how receptive they are to the idea of a patient approaching them on the subject first.

    One thing that I really hope people realize, is that although an SCS can give a person like me their life back, it comes with strings attached. If there had been another way to combat my pain as well(without the SCS) I would definitely listen to what the doc had to say.

    Take the last two days for instance. My husband and I decided yesterday to drive up north and check out a couple dive sites. Riding in his truck wound up irritating the IPG (battery) in the pouch on top of my behind. The wires going up my back (the run up to my c-spine) got irritated from rubbing on the car seat. Wasn't much I could do to avoid any of this.

    So today, this aren't as sore and we decided to go diving. Since the water has cooled a bit I grabbed a thicker wetsuit, not thinking about what a pain it is to get on. So as I struggled into this wetsuit, it kept grabbing my IPG and also causing my SCS to ramp up. So we wound up not diving. Once I got the suit on, it was rubbing the IPG wrong and I couldn't see doing that for an entire hour and a half. I do have a new suit on order.

    The reason I bring this up, is that I have to be very careful with everything I do. When I go to the gym I can't just arbitrarily grab some weights and start working out or start stretching or use certain machine. I always have to worry about pulling my extension wires, or leads or messing up my IPG.

    Maybe it's a good thing and it has slowed me down. I love it though and wouldn't trade it away!

    "C"
  • Are your limitations due to your stim being newly implanted or will you always have these difficulties. Also, what do you know about the stimulator losing its effectiveness after five or six years? Tomorrow, I'm meeting the doc who's
    doing the trial. I am simultaneously nervous and excited.
  • I also have the Medtronic RestoreUltra and the only way they're getting it back is to remove it from my cold, dead body - or in 10 or 15 years when my battery needs to be replaced. image:)" alt=">:)" height="20" />

    When I went to my first visit with my current doctor, he asked his office staff to give me "the packet" for SCS implants. It had a lot of information about his general office procedure for SCS trials and implants, and specific information on the Medtronic, ANS, and Advance Bionics units.

    After checking out the websites for each company, I was taken in my the Advance Bionics implant, because they have the most interactive website and really create quite a "sell" for their unit through their forums.

    When I went back to my doctor, I had convinced myself that the Advance Bionics unit was my salvation. I was crushed when he said he didn't intend for me to get that literature because he no longer implanted that unit. I was stunned and immediately burst into tears, asking why he stopped using them. His answer to my question was "I got tired of replacing them when they don't work."

    My doctor spent probably an hour with me that day, trying to calm my hysterical reaction and explaining to me why that unit wasn't the best choice for me, even if he still implanted them. In the end, I feel like I got a better implant with the RestoreUltra.

    I feel so ridiculous looking back on all that, because the way I was fussing, you would have thought the man killed my best friend! :))(

  • I'm not "C" and don't play her on TV, but... ;))

    I don't really classify the issue as a "limitation" or a "difficulty" per se. For me, personally, I classify it as an awareness, and it is a permanent thing. As long as the wires are there, you have some level of risk for pulling them, which can cause a multitude of problems, on both ends of the system.

    There's one more thing I wanted to add to the discussion. When I started considering getting the SCS implant, all I thought about was that it would take away my pain. Whenever I would start thinking about everything involved and became overwhelmed, I would return to my mantra, which was "but it will take away my pain."

    When I had my permanent implant, my post-op pain was very poorly managed. It wasn't as a result of a lack of effort on the part of the doctors and nurses; they were trying a lot of things, but I had an unusual problem and they couldn't get a handle on it. The whole time, I just kept telling my family members "it's ok because once we're past this, it will take my pain away."

    A few months later, I had lunch with a friend who hadn't seen me since before my trial. We're close enough friends that she could comment on specific things that might be offensive coming from someone else. She gave me this great big hug and said "It must be so good to have the pain gone and to feel normal again!"

    It really hadn't crossed my mind until that very moment - living with an SCS impant is just about the furthest you can get from feeling NORMAL. It doesn't return you to a normal pain free state. It's a calculated trade of sensations: pain or "vibrating."

    I've come to a point where I can accept that I'll never feel "normal" again. There are mornings when I wake up and wish I didn't have to choose between vibrating, drugs, or pain. I wouldn't give up my SCS for anything, but there are times when I miss the stillness.

  • Bionic Woman,
    A good post to think about. I love that I am not in as much pain and have a sense of my life back. I feel very lucky to have found the SCS system to work for me and would not want to give it up.
    Your point is very valid and why it is so important to go through the psych evaluation and SCS trial. These steps help us evaluate if we can live with utilizing and maintaining a permanent implant. We also learn from these steps that SCS is not a cure but a implanted device that has to become part of us to help us.
    O-
  • This thread is so full of information that noone would ever get just reading the brochures or talking to the docs. Bionic Woman, you sound like a poet when you talk of missing the stillness. And yet, if the surgery didn't work, you can't tolerate the drugs, what other choice is there? I, for one, resisted the idea of the SCS when it was first presented to me. I had just gone through an unsuccessful surgery, was feeling cynical and, I guess, just hadn't SUFFERED enough. Now, I am ready. I most especially am looking forward to being able to do some activities again. That reminds me, noone had said anything about what types of activities will be taboo. will I be able to play tennis?
  • Stockbroker,

    You asked about playing tennis. Of course it will be up to your doctor after the implant and everything settles in. Yes, life after SCS improves dramatically. Every day I'm getting stronger and will be back to work soon (UGH-another thread needed).

    During the Trial and weeks after the Implant you will need to be careful for the process. After the implant has healed in, I have talked to people who have regained the ability to do many activities. These people now can go diving, rock-climbing, race car driving etc. are an inspiration.

    I am still feeling the newness and learning each day what my body can do while my pain signals are being masked. (hard to explain). Each of us needs to find our limitations that won't hurt us now that we are excited we can get out of bed. LOL

    Maybe someone who is totally healed and has had the SCS longer can give you a better description of their life changes.

    Take care,
    O-

  • Well I've had mine for just nearly 5 months now and have resumed the majority of activities I used to do. Some have had to be modified which is difficult for me since my eagerness to do them is hard to keep in check. For instance, I love to go to the gym and stretch and workout. I also love to do some basic yoga. Unfortunately my extension wires don't quite make up for the amount of flexibility I have and so I have to put my own mental stoppers on myself for how far I can stretch. Also my IPG is located in an area where lying on my back, in certain movements, I am lying on or rolling over the IPG. Of course this can be painful, if not right away, the inflammation it causes later is uncomfortable.

    Now diving is my passion and I have been able to resume that as well. Now there are restrictions there due to the SCS. The unit is limited in the depth it can handle. I can no longer do many of the types of dives that I so love to do, but being able to dive again is awesome. So I have learned to compensate. The other restrictions I have with wearing my gear are due to my physical condition and not the SCS. However, I have learned ways to compensate.

    BionicWoman is right, it is very different waking up in the morning or middle of the night to the SCS. For a while I was turning mine off when I went to bed, only to find the pain was waking me up more than the SCS. So I turn the SCS down at night enough to allow me to fall to sleep, but also enough to manage the pain that wakes me up.

    When I'm not feeling well, I become more sensitized to the stimulation and have to change the pattern and intensity. Otherwise it drives me nuts and I just want to shut it off. Very similar to becoming more sensitized to pain when I don't feel well.

    I did return to working full time about 30 days post op. I worked for a couple weeks and then gave up working due to my physical condition, not due to the SCS. I have muscles atrophied in my neck and shoulders, with cervical dystonia and couldn't handle the stress. The SCS doesn't help with muscle spasms, so the stress of the job made it too painful to continue. However now I do the domestic engineer thing and also volunteer at two different Physical Therapy clinics 1 or 2 days a week. So I am very active with the SCS.

    I average working out at the gym or at home 3 to 5 times a week now and it is awesome.

    In 2007 I was offered a trial on an occipital SCS. Since I was already slated for surgery to correct the problem the SCS would have been there for, I turned it down. I was all about a permanent fix.

    Now I have an SCS to help with the "fallout" from that surgery and other cervical issues.

    I hope this info helps.

    "C"
  • Has anyone ever had problems with the trial. I did ok for the first 4 days the pain relief was great but then one of the leads some how moved and was scraping my spinal cord and swelled the cord I was is so much pain and could not walk. they pulled the leads and then put me on antibotics and left me in intense pain for 5 days till the swelling went down. Checked for infection which thank god was clean... and now here I am Do I go ahead with this thing or not they say this was a freak thing! the final things are put in different and wont move like that.... Does any one have any insite????? I really enjoyed the pain relief the when it went bad it was really bad..... and not worth the pain again
    What do I do? Jeanette
  • Jeanette,

    I can tell you that the leads are anchored incredibly well when they place the permanent ones as compared to the trial leads. The trial leads are only anchored to the skin and the permanent leads are anchored internally. I have done stuff that has pulled all the slack out of my extension wires and yanked hard on the anchor points of my leads, and thankfully the leads have stayed in place and not moved.

    Freak things happen. If the docs feel that you are still a good candidate for a permanent implant, then they must have a lot of confidence that you wont have any issues with the permanent SCS.

    "C"
  • Jeanette,

    I had swelling in my spinal cord toward the end of my trial too, but not to the extent you did. My doctor ordered an MRI as soon as my leads were pulled and that showed the swelling.

    I chose to go forward with the permanent implant, because I had an incredible amount of pain relief from the trial, and haven't had any problems at all.
  • Thank you to all who take the time to post such important information on this forum. It's so great to have a source and not feel so alone. I plan on making some friends here as my fiance and I get more acquianted with our options. Thanks again from the bottom of our hearts.
  • I am so happy I found this site! All of you have been such a help to me.
    I too, suffer from chronic pain thanks to a build up of scar tissue from rods placed at L4 & L5 in 1995. My pain has gradually increased over the years until it is about an 8. The pain in both feet is so bad it's hard to walk or even wear shoes.
    On my first visit to a pain clinic the pain Doc recommended a SCS implant. I go back April 13th. and let hem if i have decided to go ahead with the trial. Thank you for helping me make up my mind.
    Right now i am taking Oxycodone 40mg. twice a day. It takes the edge off some of the pain if I stay off my feet as much as possible.It is the only thing I have found that really helps me. I can't take Lyrica or anything like it. I had a very bad reaction to it. I really thought i was going to die!!
    I wish i could take away everyones pain.
    I fall down..
    I get up with a cracked rib!!
    I fall again... I get up with another cracked rib!! ~X(
    And so it goes.
    A very gentle hug to everyone.

    Patsy
  • So happy to have you here and welcome I'm not a moderator or anything just someone who once said the same thing..."so happy to have found this site!"

    I hope you're trial goes well I have done one too and am awaiting reinsertion of my permanent SCS(long story) and it was truely wonderful for me! I could picture less pain/nerve medication in my future which was more hope I had in a long time.

    As I'm waiting or even before the SCS I can't imagine not having Lyrica, my ankle & foot would be stiff and the pain is impossible, I tried not to take it at one point and couldn't stand myself! So God bless you! I think you will truelly be amazed & what's there to lose? You can always take it out and find another option if it's not for you!!
    Hugs back >:D< >:D< and thx for sending yours!!
  • You will find many of us here, all the way through permanent implants to just being informed of the SCS being an option.
    Study the information and decide for yourself. I advise everyone that has the option to at least do a trial. There are some standard risks and that is a fact of life, but, if it works...

    My trial insertion was uncomfortable, it took three esi holes in my back to get the lead in the correct place. I had some good pain days and some bad pain days. I ended up being one of the luckey ones I got to keep my trial in for 8 days. I was very used to it when it was removed, the next week was pretty rough. Finding a treatment that works then losing it is pretty hard to take!

    Now some two+ weeks later I am still awaiting my PM and my HMO to stop fiddlefarting around and approve the permanent one! I miss my SCS.
  • Thank you guys for the imput. Tomorrow I see the Pain Doc and am ready to move forward. Thank goodness it was not today i have to go or I would have not been able to make it b coz of the pain. Some days nothing helps does it?
    This day I just wanted to stay in bed in a fetal position but can't lay on my side as it makes the pain worse.
    Tomorrow will be better. I do not have these days often.
    Wish me luck that everything goes smooth and the trial works wonders for me.
    Best of luck to all of you. You are in my thought and prayers daily.

    Hugssssssssss >:D<
    Patsy W.
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