This is concerning a Spinal Stimulator for relief in my back and legs and feet....

Hello, I know there are some other threads and I have read some of them, but I do have some questions that maybe some of you can answer for me.

Brief, Brief history.  I have had back problems since I was 20 years old and in a head on car wreck.  I have the following vertebrea either herniated or partially herniated.C5, L4, L5 and S1.

I also have what they call some type of Immune system arthritis and possibly other minor types of arthritis.  The Immune type attacks my soft tissues and causes inflammation in my ankles, feet , knees and sometimes hands.  That along with Digenerative Disc Disease. (which I think is just arthritis in the spine).

Anyway, I played football, and baseball in Highschool, had the wreck at age 20. ... lived hard and adventerous playing all sports from Rugbee to Competitive National League Softball for way too many years.  I hurt for a long time during it and stupidly didn't stop until, well, it stopped me 

 Anyway, sorry to go on and on, I am a 40 year old male with a 4 and 6 year old boys that go and go and go.  Well, about 4 years ago it all got worse.

Real long story short, I have tried it all and I can't get rid of back pain or my leg and feet pain.  I really think a lot of my feet pain is the inflammation they can't get under control causing Chronic tendonitis in the tendons and ligaments in my feet and ankles.  They hurt all the time, my low back hurts all the time, and both are "sometimes tolerable" with a pain patch.  But even with that, there are times they still hurt unbelievable and it has taken my life away from my family.  I try and do things with them and if I push it too far, which sometimes you can't help but do, I pay for it for days and days.

I am supposed to get this stimulator implant two weeks from today.  I have to get another psych release for insurance....thats why I have to weight two more weeks.  I have heard many scary stories on here about this procedure and to be honest I was pretty excited about it, and actually had some hope.

This has been hard, I have had problems at work and at home and depression snuck up on me and it has taken me away from my family.  My wife has to do too much stuff a lot of the time, and over 4 years, 1 year where I missed work more than I went and stayed curled up hurting with ice and heat on the couch all the time.  My wife is not exactily a care taker when it comes to anyone other than our children, she is more suck it up and go type.  Anyway, it has caused her a lot of stress and I know it, and I try when I am able, but.....well, anyway I just wish this could work so I could get back to coaching my boys rather than trying to make some of their games, and so I can start doing more and more for my wife, and well also to get back my own social life, I gave up softball at first, and then even gave up golf.  A round of golf on a "good day" will give me many bad days...I did that everyonce  and a while and quickly my wife got very mad about it, saying "you know what it is going to do to you before you do it ......." and I know it ,but I literally have very little of a life.

I am soooooo sorry I went on and on with this, not my intention at first but mainly just want some opinions about this stimulator and also if it helps back and leg pain, will it help the feet pain part that comes from the tendons etc...

thanks so much in advance,

Hartdawg

I LOVE my SCS. My life has been radically changed because of it!

You are supposed to have the trial first & see how that goes. If it goes okay, then you should be a good candidate for the permanent implant. It did take almost a full year to get the programming right. Also, you may want to do some research into which brand you're getting implanted. The most popular brand has had recalls. I have the second most common brand & I have not heard of any recalls or major problems from my SCS brand. Also, my brand is the smallest on the market. If you're skinny like me, that can make a big difference for comfort. I know someone who has had both the most popular brand & the brand I have & she said she can really notice the difference.

As far as the psych eval, from my understanding the main thing they're looking for is will you have reasonable expectations for the outcome. This will *not* take away all your pain. A good result is considered 40% reduction in pain. I honestly answered that I would do just about anything for even a 10% reduction in pain because my life was so difficult from the pain. If you're taking a test (like the MMPI) then you can look up on line how to answer. From what I've seen, people who answer "yes" to every pain question are not candidates -- i.e., there are ?'s that ask if you agree that you have pain in your stomach, your head, your feet, your legs, your mouth, your eyes, all over. If the answer to those is yes, it's not really worth cheating the test because an SCS won't help anyways. If your pain is mostly localized with pain consistently radiating to the same place (e.g., always down your right leg to your heel, or always down your left leg to your knee, etc. -- if it's constantly changing, no good to get the SCS), then they should be able to get the implant programmed to a good level of relief.

My guess is that getting in a round of golf will still be excessively painful for you. The SCS does not eliminate pain, it just covers it up. Think about the white noise machines that play beach noises so you don't hear your noisy neighbors. The neighbors are still there, they can still cause destruction, you may still wake up to find broken beer bottles spilling over into your yard, but at least you get a mental break from thinking about it for the time you have your white noise machine on. The SCS does the same thing. Your pain will be covered up, but if you over do, your muscles will still shut down, you will still be physically exhausted & when you have to turn the SCS off, the pain will come roaring to life.

I know it sucks, but I really would recommend that you try to make any behavioral modifications possible before the surgery. It is a major decision. It is not without risks, and the recovery period is months. Only your doc can say for sure, but I'm not sure you're going to be able to do all the things you want to do after the surgery. Try to live without them, first. If you make changes & still can't even take care of basic needs like going to work or doing housework or visiting with friends, then the SCS may be a very good option. Like I said, I love mine; but, I can't go running like I used to before all the pain issues. I needed to modify my behaviors & expectations. I still can go cheer my friends on at races. I can go on light fitness walks with them, but things will never be the way they used to.

Hope everything works out for you & you find some relief. If you have any specific questions, please let me know.

Oh by the way.....


PA Lady, thanks so much to you as well.

Hartdawg

Frances,
First I want to say that was one of the best posts I've read about stimulators. (Hartdawg lucky you both came around about the same time!) I learned some things I did not know from previous posts.

Hartdawg -
Do you use an external stimulator like a TENS? If so, does that help your feet? While it's not the same as an implant, it might give you an idea if that sort of stimulation has any impact. I have an interferential stimulator I got through my PT, and he has said it's like a TENS but more in that it helps with pain and increases blood flow, whereas the TENS only does the former. I have neuropathic like symptoms in my feet, although it's not diabetic neuropathy. Pain down the legs, failed back surgery, and on. We all struggle to put together the best pieces we can.

By the way, I'm also in the mental health field and seeing CP from the inside out is has been a learning experience I could have done without. But it is what it is. I can say to you prepare yourself for a lot of grieving. The likelihood is even if a stim work for you as it does for Frances, you're not going to have the active lifestyle you want with your chidren or things like golf. And you have to begin to think about the price you pay for overdoing it. As Frances' post indicates so well, you may still be doing more damage even with something as seemingly innocent as golf. You were used to being very athletic, so this is going to be one of the bigger areas for you to grieve. I think it's a daily struggle. I have found Marsha LInehan's work on Radical Acceptance (part of Dialetctial Behavioral Therapy) to be very useful in this regard.

There is great support here for things beyond the stim unit. I have found this board to be a godsend at helping me process the never-ending path of chronic pain.

PaLady

Hello anyone.....


I just read on Medtronics Site that " Patients should be detoxified from narcotics prior to lead placement"

I am on a duragesic patch and my Dr. didn't say anything about this.....

Have anyone of you ever heard this before.....if so what's the deal? Why?

Thanks greatly and God Bless,


Hartdawg

Absolutely *must* turn the SCS off to drive at all times. The level can jump & it's too dangerous to drive safely because you may have to make a quick jerking movement to avoid a collision or such & that could cause the SCS to jump, which would be a major distraction. As such, they don't allow you to leave it on while driving.

By "jump" I mean that the tingly feeling can go from moderate like when your leg "falls asleep" to feeling like you're getting an electrical shock (christmas lights in the rain when I was a child, maybe you can't relate, but try to imagine). You will have a remote control to turn your SCS on/off, to change programs & to turn the "volume" up/down to get more or less pain relief.

The SCS is actually three parts. There is the battery pack (similar to a pacemaker) that will be implanted into a fat deposit (if you're like me, there's really only one place for them to put it -- which can make sitting a little uncomfortable at times, mainly on hard surfaces). Then there is the cord which will run from the pack to the leads. The top of the cord is exposed & will have a certain number of leads.

As for turning if off, personally I can't sleep with it on. I know that is a fairly common problem. Different positions will alter how much relief you get & where you feel the relief, so putting your feet up, for example, or lying flat may not be comfortable for you. I also turn it off to take a shower or get in the pool -- no reason for that except that it's a hassle to get out & dry off if it jumps because I'm shaking all over & trying to get dry before picking up the remote -- probably fun to watch, not so much fun to go through, but that's just personal preference. If the pain for those tasks were unbearable, I would probably choose to keep it on.

Certain activities may not be comfortable for you to leave it on. You also need to turn it off when going through the airport security or it can jump. Additionally, sometimes you can have a slight tremor while the SCS is on. It's fine to leave it on, but at times people stare & you might choose to turn it off sometimes. The SCS has a transdermal charger that is not comfortable to use when you have the SCS unit turned on. It feels very hot on the skin even with the holder that protects you from getting burned. This is not the case when the SCS unit is turned off. Lastly, you might find you don't need to have the SCS (i.e., when pain is better controlled there are some "in-between times" where you won't experience much pain.

If I can say which one I have (hopefully that's not against the rules) -- I have the Boston Scientific model (also has done business as Advanced Bionics). Medtronic is very popular & has a lot of good points to it, but I felt the BS model was a better choice for me because it's smaller, has more programming choices & has an extra port for a second set of leads. The BS models allow 2 cords, each with 4 leads on them. The leads make contact with your dura (covering of spinal cord) and transmit a signal that basically overloads that part of your nervous system to the point where it cannot process any sensory input. It all depends on your success with the trial, but in theory it is possible for them to connect the lead to a place that will "numb" the nerve input from your feet & legs. I have that. It does not do anything for inflammation. The BS model also allows for up to 4 programs, so I have 1 for my legs/feet, one for my arms/neck, one for my neck/head & one that gets neck/shoulders. The leads can slip during the first 6 months (first 2-3 are especially critical). After that time, scar tissue will grow around the leads & hold them in place. To get a good result, you will need to very carefully follow the doc's instructions. In my case, since it's in my neck, I could not lift my arms above shoulder height for the first couple of months. I had to get help & re-learn how to do some things without doing things that could move the leads, like wash my hair without reaching my arms above my shoulders. Your restrictions will be different since they will be based on where exactly you have your leads placed. Even with all my caution, the leads still moved some, and I got an osteopath to use manual manipulation in order to work them back into a more therapeutic place. Also, you will almost certainly need to meet with the sales rep multiple times during the first 6-12 months for reprogramming to get to the programs you like. Since the leads move during that time, you need to go for reprogramming to keep up with the movement. It's a little time consuming, but it's considered customer service & doesn't cost any extra so be patient & keep at it until you find relief.

Hope this helps. :)

Frances...

Awesome information....let me ask you something..

Well, actually tell you something. I have not talked with any Rep. at all....they said that I will have a lady (I guess a Rep.) with me before they do it that day and she will be there before I go home the next day to explain and answer more) Do you think she is a rep of Medtronic or someone or just an employee of the Hospital?

thanks again so much, and sorry to be such a bother.

I have just been hopeful for the first time in a long time and am curious.....they just gave me a video...I learned more from videos and forums on the internet

seriously, thanks and God's Speed to you and yours,

Hartdawg

Never heard of it.
I was on narcs straight through the trial, surgery, etc.

One thing I was told was not to just follow my regular schedule with the Actiq I was taking. I needed to be more mindful about whether I was actually in pain or not. When you're used to being in pain all the time, you take meds earlier in the pain cycle to keep the pain from getting out of control. The point of the SCS is to keep your pain from getting out of control, so if you jump to narcs without giving it a chance, you won't get a good read for yourself as to how helpful the SCS actually is. Of course, it's hard to be mindful if you're cut down so much that you're going through withdrawal.

You'll need to talk it over with your doc, but perhaps he would change you to Fentora or Actiq around the time of the trial so you can take control over how much medicine you receive & to see what you actually need. The trial is only a week or so & it is minor surgery for them to implant the leads (battery is external for the trial) so it's not like you're going to be pain-free that week, but it might be helpful to see if you're able to cut down on meds (which is supposed to be the main measure of success).

Post-Op for the permanent implant was not much fun at all. My PM told me recovery might have gone better if I had been sedated for the 5.5 hour procedure, but I'm terrified of sedation/anesthesia so I opted not to have anything. As such, I can't really tell how you might respond to recovery period, but I ended up taking a **lot** more meds for the first 6 weeks after surgery (I was up to 15 meds -- including neurontin & lyrica at the same time, so I think it's probably ok to do both). I spent the rest of the year cutting down to 3 meds (vs. 5 pre-op) and am now down to just taking Actiq for b/t pain.

Again, it's not as quick to reach maximum therapeutic value as a pain pump does, but it has let me be at work more, visit with friends & be more involved in family life. Those values are very important to me, so it was worth a year's work to be able to enjoy more activities and get off of a lot of the meds.

One last word of advice -- you will not be able to have MRI's after the implant because of the danger of the leads heating up to 106degrees (ouch!) so if you need any (of your feet, perhaps) get them done before the implant. As an alternative to MRI, they do a CT with contrast, bone scan & some sort of nuclear medicine test. It can work, but better to just have any MRI scans you think you might need on hand.

One last thing, Hart. If it was me, especially after all Frances has said, I'd be getting all my questions answered in advance - incuding and especially what type of unit, etc. I wouldn't want to be asking question the day of the trial implant - especially if I might be under some type of sedation.

I think insurance companies will only pay for one trial, so if, for example, one manufacturer fails I don't think you'll just be able to try another one unless you can pay for it. And my hunch is that docs implant the brand they're used to - similar to the way drug reps influence the primary meds a lot of docs prescribe. So I would strongly suggest formulating a lot of your questions now and calling and getting some info. and doing your research. And even if it means waiting awhile longer, it could well be worth it.

Good luck!

PaLady

Why do you suppose I am going under and staying over night, as opposed to local and talking with you and then you going home afterwards. Isn't that the way its normally done.

Just wondering,

thanks,

Hart

I have a stimulator and love it too, but mine is the Medtronic implant.  I talked to the reps from both companies ahead of time and I didn't leave my conversation with the Advance Bionics rep feeling like she had any clue what she was doing.    It seemed like every answer either began with "Well, I'm not positive, but" or ended with "but we should ask your doctor to confirm that information."  For example, I asked for an estimation of how often I'd have to charge the implant and she said I'd have to ask my doctor.  But when I asked the same question of the Medtronic rep, he flipped out a piece of paper that showed how often the implant had to be recharged based on some typical low, medium, and high usage settings.  It may be that I just had a cruddy rep from Advance Bionics and/or a really good one from Medtronic, but for me, feeling confident with the rep was very important.

I'm having a bit of trouble concentrating this evening, so I apologize if this was addressed and I missed it.

Another question you should ask your doctor is what type of lead s/he plans to use with your permanent stimulator.  There are two types of leads that have different benefits and the surgeries to put them in are very, very different. 

There are percutaneous leads, which are like thick strings and they put them in through a needle, like an epidural injection.  My understanding is that they do that permanent implant under twilight sort of sedation, because you have to be awake enough to tell them where you feel the stimulation during the procedure.  Those leads are thinner and more likely to move around when you change position.  I believe they always use the percutaneous leads for the trial procedure. 

The other type of leads are called "paddles" which is what I have.  For that implant, you have to have a laminotomy so they can fit the lead in, so it's a more indepth surgery and requires full general anesthesia.  The paddle is less likely to move and can get better stimulation for people with certain pain patterns, but there's that trade off of having to have the laminotomy. 

For my trial procedure, I wasn't sedated at all and only had local anesthesia where the needle went in.  It took about 30 minutes for my doctor to get the whole thing in place, then I spent another 30-45 minutes with the rep while he programmed the external stimulator and taught me how to use the remote control.  Then I went home.

For my permanent implant, I had to be at the hospital 2 hours prior to my surgery time, to get a dose of IV antibiotics in ahead of it.  Obviously I don't remember, but my family says it took the surgeon about 2 1/2 hours to complete the procedure, including the laminotomy.  I was in the recovery room for another 1 1/2 to 2 hours, then sent back to the ambulatory surgery holding area. I stayed there for another 2-3 hours, of which I spent about 45 minutes of with the Medtronic rep while he programmed the implant.   I was discharged from the hospital and on my way home, buzzing right along with my new best friend, in less than 12 hours from start to finish!

 Tom,

 Since my first onset of this forum it has been like a blessing from God.  Everyone has been so nice and since most can completely understand, it is just an unbelieveable experience conversating with everyone and getting replies from people like you who obviously care and that touches my heart.  I am not normally a person that just expresses my emotions so easily, but with people like you its easy.

Thank you for your kind words, they truly mean a lot to me.  Its strange, I have been through so much, but even though I have read several downers on this matter, I still for the first time in quite a while have a wonderful thing.......HOPE.  I don't think ANYONE can really grasp the crap that goes with hurting almost ALL the time.  I just love my family so much, and this crap has really hurt my relationship with my wife, and it hurts so bad that she can't completely understand.  Dont't get me wrong, I understand that she has become angry with the situation and she is not the type to talk or try to get help.  She is just so stressed, with the kids and worring about me losing my job.  And my kids, well I still do things with them, but often when I am just completely down with pain, it makes me sad not only that I can't do whatever with them, but that they are so use to seeing "Dad on the couch", and sometimes my oldest, 6, says things like "Dad, you are ALWAYS feeling bad" .  My wife is the type that is so stressed about everything and she vents by walking around the house complaining about this and that out loud, and that just adds to my pain and literally .... I don't know, I don't blame her for everything, I understand about her "anger" its just I wish she would just somehow understand sometimes and just like I was a kid and would wrap her arms around me and say, its going to be Okay.

Well, I did not mean to go on that long, really just wanted to tell you thank you, and I will stay in touch with this board, and hopefully all of you.

God Bless,

Hartdawg

Hi, Hart,
I'm glad you're asking some questions now. And I sure would make 1,000% positive that you're getting a trial first! Glad that there are some people here with great personal experience to help you. I've learned a lot from this thread.

And I've been a fan of John Kabat-Zinn. And mindfulness in general, although I think it's time to get back to some real application!

PaLady