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Posted 7/8/2008 7:56 PM (GMT 0)
Hi all!  I just wrote this whole big post and lost it!  ARGH!!  Anyway, I have just gotten my trial out yesterday for the neurostim.  I didn't realize that it wasn't for mobility, it was for pain.  After my doc telling me that, I found that I was getting, what I thought about 30% relief from this.  He thought that was good and he feels very optimistic about implanting the device.  He asked about my coverage, and I told him that I didn't get enough sensation in my hip area, he said that that is a common thing and that if he puts more electrode heads in, that we would get better coverage and I will love it!  I still have to schedule the surgery, as I am still a little unsure.

Also, I was told that some people get an increase in relief over time, anyone have that experience?  And was told that people are sent to PT to help get mobility back, is that true too?  Now I've read back over 1,000 posts, and I apologize, but I just can't sit here long enough to get through them all, at least not right now!!  But I was wondering if anyone had any new thoughts, experiences, etc.?

I am also very concerned because my doc never gave me breakthrough pain meds for my trial, and I was SO painful the first 3 days especially, and I'm reading that the incision is excruciating!  ARGH!!  He's usually good about it, but this time increased the muscle relaxer and lyrica, and they both make me SO sleepy, and didn't give pain meds!!  I didn't understand that one.

And another thing I'm concerned about is that I was SO uncomfortable with this attachment, and I've been told that I won't have any discomfort with the implantable one, but I'm read that some of you had some discomfort with the device!  If I was that uncomfortable during the trial, is that a prelude?  What else should I be expecting except for infections?

I'm SO confused now.  I was VERY optimistic after talking with my doctor, and now I'm not so sure!  Maybe I'm just worried over nothing, but I really want some relief, and I thought that 30% was better than nothing!!  And as time passes since I got this removed, I am finding that it may be a little more than 30%, and I feel a great deal of difference, but I'm hoping that some of you will help shed light on my situation!!

Thank you all, and I hope that all of you find relief, or at least have a good day!!

Posted 7/8/2008 10:59 PM (GMT 0)
Hmmm.......my understanding is that unless you have at least a 50% reduction in pain levels, that you are not a candidate for the permanent spinal cord stimulator.
If I only got 30% or maybe a little more during the trial, there is no way that I would consider a permanent implant. I also understand that there is slight to moderate reduction in pain control once the leads are scarred in, due to the development of scar tissue...
I would make sure that you have a good talk with all of the others who have had scs implanted and make sure that you feel confident that this is going to work for you.
You might want to do an internet search too , maybe you can come up with other research papers or information about the reduction you are supposed to have before you make your decision.
I did alot of research into spinal cord stimulators when the doctors wanted me to get one, and I decided not to, for a lot of reasons, but we all have to make our own decisions.
Did you ask your doctor what would happen if you did get the permanent implant and it didn't work , or work as well as either one of you hoped? about lead migration, and failure of the unit? What would he do in the event, that you were not getting the coverage that you need to control the pain? Would he continue to prescribe meds for breakthrough pain and your normal pain levels or does he expect that the scs will take care of your pain levels?
Anyway, good luck with your decision, I hope that it turns out well for you.
Sandi
Posted 7/9/2008 3:32 PM (GMT 0)

Sandi, you have given me some great advice!  Thank you!  And you might think that I would have asked all those questions, but I hadn't and I think I will!  I appreciate that!

I am finding that as time passes, I really DID get more relief than just 30%, but maybe not quite 50 though either, but I haven't responded well to other treatments, even the decompression that I had in January made me feel worse!  So I don't know if my doc thinks that since I am getting even just that 30%, MAYBE, just maybe he thinks that it's enough to implant?  I don't know!?  But that is something to think about, thank you!!

If anyone else has something to add, please do, I'm really just, uh, well, confused, there isn't any other explaination!!  LOL!  And I appreciate any help, and if I can help someone, I'd be GLAD to!  This isn't fun to go through, and it's SO nice to have some help and guidance, you all are SO great!  Thank you!

Good luck to all!!

Posted 7/9/2008 4:29 PM (GMT 0)
Dragoness, If your doc thinks you will do better with more leads/electrodes, what about doing a trial with them so you can tell if they will work before you go for the permanent? Would they even let you do another trial so you can be 100% sure it will work for you? There are a few different types of stims and leads that you may want to try before you settle on one especially if you aren't sure your first trial was a success. Also you may want to explore other alternatives such as a pain pump.

In other forums I have seen people say that they get better results once their permanent implant has a chance to heal and develop scar tissue around the leads. In that case scar tissue is a good thing in that it helps hold the leads in place to avoid migration. Quite a few people say they have to be reporgrammed multiple times when they first get the perm because the settings don't last. They also say that gets better with time. They say they have pain and discomfort at the implant site and lead insertion site which gets better with time. The implant site can take a few months before there is no discomfort.

I've always been told that the trial is way more uncomfortable than the perm, but the perm is more painful because they have to cut you open more. The trial is uncomfortable because of the pack you have to carry around and the leads coming out of your back.

I don't know if I answered all of your questions, but hopefully enough to help. Again don't go ahead with it unless you feel 100% that it will improve your quality of life and don't let the docs or reps push you into it if you feel in your heart you don't want it. And remember down the road you can always change your mind.
Posted 7/9/2008 4:34 PM (GMT 0)
Dragoness,
It seems to me that there should be no rush for you to make the decision. When I'm that confused or doubtful about something, I keep seeking info., etc. until I feel comfortable with a decision one way or another. So even though I know you want pain relief (don't we all?!) maybe relax a bit and decide to hold off until you're more sure of what you want to do. I sort of think you're doing this, but try to relax a bit as you seek info.

One place you may want to search is www.medscape.com. It's linked to medline.com, which is one of the sites doctors use to access medical research. You have to sign up for medscape, but there's no charge. And you can even access some of the medline articles - although some of those are more technical, and some do require a subscription fee. It's like going to a medical library. You can see what the medical research says about stimulators, success rates, different brands, etc. - or at least whatever research has been done. It may take some creative searching, but before i had my lumbar fusion I printed out tons of articles from there to read and learn the different approaches, etc.

PaLady
Posted 7/9/2008 5:01 PM (GMT 0)

You don't know how GRATEFUL I am that I have you all to "talk" to!!  You have given me a lot to think about!!  And yes, I am trying to find out as much as possible before I go for it.  I did make the appointment anyway, it's on Aug 18th, but I can always cancel, I just thought that if I make the appointment later, I can do some research, and if I decide that I don't want to, I will cancel!

Thank you PALady for the web site, I will definitely look on there for some info!!  And you are right, I need to relax about it!  I need to make the best educated decision I can, right?!  Thank you for all your support!

And Mami, thank you too, you have given me some good information, and yes, you did answer my questions, that's exactly what I needed to know!!  Thank you!  And thank you for your support as well!!

I would love to try out other leads, but I was SO uncomfortable with the trial, that I DON'T want to do another one, but I see exactly what you are saying!  And my doc seems to think I had a successful trial?!  I might just be very nervous about having surgery too, this would be the first time being cut open too!!

I did get a lot of relief, especially in my leg, and a bit in my back, it was just the hip, and he seems to think that it wouldn't be a problem with extra electrodes.  And being that he is SO optimistic, it makes me think that it might be a good thing.  He is a good doc, just a person that is very to the point, and has tried to do what he can to help, and physically I could tell that he felt bad when it wasn't working!  I guess as Mami has said, I can always have it removed, right?!

I appreciate all the support, it really helps, a LOT!!  Thank you all!!  And yes, I am very ready for some pain relief, as you said PALady!!  But I do want to make sure that I am prepared and 100% ok with it!  That is why I'm asking so many questions, I guess!  LOL!!

Good luck to all, and please, if anyone has more to add, I'm open to any and all advice!  Thank you all and wish you all some pain relief!

Posted 7/9/2008 5:27 PM (GMT 0)
"I would love to try out other leads, but I was SO uncomfortable with the trial, that I DON'T want to do another one, ..."

Dragoness,
Look at the words you just wrote. If you were so uncomfortable you don't want to do another trial, why would you want a permanent implant? That comment from your stood out, at least for me. Sometimes we want pain relief so badly we'll try anything, and docs may aid in this process because as you say, he wants you to get relief, too. Plus, as I understand it there's good $$ to be made with the implants for the hospital and maybe the doc, too. Not that that may be guiding your doctor's decision, but it may be a factor in how much it's pushed by the hospital, reps for the comany, etc.

Even though you can have the implant removed, it is still surgery, and nothing you want to do lightly. And each time someone cuts you there's scar tissue and it's often not a good thing - especially if you may seriously be waiting for an artificial disk. This has got me thinking, too. Have you consulted with a neurosurgeon who does artificial disks, and ask about the pros and cons of a stimulator implant in advance of major surgery? I mean, it may make things more complicated. What is the reason for waiting? I know you're young, and docs may - with good reason - not want to do such a major procedure. And every year more new techniques, etc. are developed. If you don't have a lot of degenerative disease, maybe waiting for you isn't such a bad thing (in regard to the disk), but is any kind of implant (invasive procedure) a good thing? Might it put at risk further surgery? That's what I'd research if I were you. And if you really know you're going to, at some point, have a disk replaced or something comparable, how long do you plan to wait? And is the better strategy to wait using oral meds?

Maybe I'm off base, but these are the things I'd be asking myself.

PaLady
Posted 7/9/2008 6:37 PM (GMT 0)
PALady, GREAT ideas, and very good thoughts!!  You really have me thinking about this, you are SO right about scar tissue, etc.  And right, another surgery if I don't like it.  Wow, I never really took into consideration most of those things!

See, I do have DDD, but at the sites of my problems, see, I have L3-4 as a problem disc, it's lost its fluid, has a tear, impinging the spinal cord, and DDD, then L4-5 is herniated but never gave me a problem, though there is loss of fluid in that one as well, and that was confirmed (both discs) with the discogram, MRI, etc.  I have a cervical herniation and rest are bulging.  And funny, my doc never asked for an MRI on my mid back!!  LOL!  I only get fatigue, as far as I'm aware in my mid back.  So, I'm not sure if I'm a candidate for the artificial disc.  My doc had me look into it, and in the US, the FDA only approved it for the lower spine, insurance doesn't cover it, and I have a case pending, so the neurologists here won't see me!!  I don't know what happened to hipocratic oath there, but they say it takes time from their other patients, which I understand, to a degree.  They say that I'm not a candidate for fusion because I'm so young, and was told that the average of the fusion lasting is 10 years, though I also hear that's not always true either.  But the fact that the fusion is so permanent, they prefer I try other options first, which obviously makes sense to me.  I've gone through the past 5 years of treatment with only getting progressively worse, PT -worse, decompression - worse, the epidurals never really helped too much, I've had more than I can count of those!!  And now I'm hearing research saying that the steroid could be breaking some of the structures down!!  What help that was (sarcastic)!  I am incontinent too, mainly nocturnal, but it's not medication, and I've been to a urologist and he said there was nothing structural, so my PM said then it's nerves if there's nothing structural!  So, sorry for going on and on, just trying to give a little bit of history.  So, this was an option that my doctor thought because I've been in so much pain and he has been trying everything that he can to help me without being invasive.  I think he's at a loss too, and as you mentioned, PALady, he could be emotionally wanting to help, and just doing what he thinks is best, but I do have to ask myself those questions and do more research, I have to go on that site you gave me, which I will do right after this!!  Those meds, man, I get so forgetful sometimes!!  LOL!  Mainly short term, but long term too!  I meant to have already gone to the site!!!  LOL!  But I will now, I need to be much more informed, and though I have the appointment, I still have plenty of time to make a good decision based on education!!  And I thank everyone, especially you PALady, you really brought up some great points!!  That's why I love my new found family of CP's!!  LOL!!  Thanks guys!!  And please, everyone, if you have something to add, please do!!!

Posted 7/9/2008 7:45 PM (GMT 0)

Hi Dragoness,

I have been reading thru here. While I have no real experience with the SCS, we do have a couple of people here that has tried or have the SCS implanted and I don't think they are getting good results. With one I remember the leads kept migrating and they would go back in and fix it. One had like I think it was 3 surgeries to correct the problem. From what I have read here on them and knowing one person personally that had one, they were not of much help with nerve pain. Its suppose to be I thought a device to help with nerve pain. I don't think people get near the pain relief they need with them an the drs are all too quick to recommend them to patients. Its almost like trying to give a patient a quick fix. Lets face it, doctor's don't like to think they can't fix a patient. 

I have the pump and mine was implanted June of 05. Let me tell you, I have had numerous surgeries, that surgery was one of the hardest to recoup from. My dr truly down played the surgical part, but I'm over the mad for that because the pump is working very well for me. I have a nasty scar on my back that is fairly big per hubby and a nasty looking scar on my stomach. Of course, my bikini days are long well past,lol. I do know Medtronic has a recall on certain pumps because the gears have stopped working in some of the pumps, and another alert is masses developing at the tip of the catheter. I spoke with my dr while having mine refilled yesterday about these masses. He told me the biggest problem is uneducated drs having these implanted in patients and they don't which kinds of meds can be used or can not used. Also if a patient is on a high dose then they are a prime canidate for granulomas to occur. Alot of people are not aware but high does of Morphine will cause an infection and I am talking oral Morphine.

You have been given some excellent tips here and I know you will follow up on this and do your homework. You can also Google the stimulators as well and get a ton of info. Try to relax somewhat if you can. You have plenty of time to make a good educated decision. I know it can be overwhelming just the same. But, just take a big deep breath and kick back and collect your thoughts,lol. Gentle Hugs coming your way. Susie 

Posted 7/10/2008 6:11 PM (GMT 0)

Straydog, what a cool name!  LOL!  I'm a BIG dog lover!  Anyway, thank you very much for your information and support as well!  And I definitely still am doing a good bit of research, everyday!!  And yes, I've gotten some great tips from everyone, and I do plan on following up on that information as well!  I thank you all!!

Good luck to you and everyone!  I hope that we all get the relief we SO desperately need!!

Keep the advice coming, I really need it!!  I love to hear what people say too, rather than just what I find, because the information a lot of the time is doctor based or product based, so finding GOOD information can be hard!  Thank you very much, I really do appreciate the advice!!

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