Any using the Boston Scientific Precision Plus SCS?

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modelmaker
Regular Member


Date Joined Feb 2009
Total Posts : 168
   Posted 4/23/2009 10:16 AM (GMT -6)   
I am thinking of changing my PM doc. Lots of reasons.
I went to a new doc whose specialty seems to be SCS implants. They told me right up front that they DO NOT prescribe opiates. The will prescribe some sort of pain meds with the use of the SCS if needed.

This stimulator is supposed to be the latest and greatest SCS on the market or so they say. Does anyone in our group have experience with this product? How effective is it reducing pain? The literature talks of "reductions in pain meds" but not elminating them all together. What meds have you found to be effective with the Precision Plus SCS? Are there any negatives? Would you do it again?

I am desperate for help. I have climbed the opiod hill of increasing dosages too many times. I am still in variable but ever constant pain and am looking for another answer. I hope this is it but I am affraid to go through this without some knowledge of real world success. I am hoping that our group might provide some encouragement.

Thanks.

Modelmaker

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2197
   Posted 4/23/2009 12:51 PM (GMT -6)   
I have it & absolutely love it. It has been life-changing for me. That said, it does not completely eliminate my pain. Then again, neither did pain meds. I don't think that expecting it to completely eliminate all pain is reasonable & even with the SCS you may still need some pain meds some of the time just to deal with flare-ups. I'll put my story briefly & you can let me know if you have any other questions. I personally think that the BS model is better than the Medtronic models, but there are others who believe differently. It is smaller & able to do more things. I've heard that there are pre-programmed levels on the Medtronic SCS's whereas with the BS models the programmers can set it for whatever maximum strength is tolerable. There are also multiple programs with the BS SCS that help to address the fluctuations that naturally occur whenever someone changes positions.

Pre-Implant:
I had a Craniotomy & C1 Laminectomy to treat a neurological condition. Post-op I was in a lot of pain & it seemed to be the result of scar tissue growing around the occipital nerve & also b/c I had DDD and my C-spine was not stable. I was on 15 meds just to be able to function at all. I was having a lot of side effects from the medications & would end up taking medications to treat the side effects of medications I was taking to treat the side effects of other medications. The trial of the SCS was moderately successful, reducing my pain by about 50%, so we decided to proceed with the permanent implant (8 leads at C2).

Post-Implant:
It was nightmarishly painful for me in the months immediately after the implant surgery. We had to up most of my meds to help me deal with the horrific pain. But after about 3 months I was much better & started coming off the medications. I have now had the implant for 4 years & couldn't be happier. I am currently on 2 meds: Lyrica (I am on 1/12 of the dose I was on pre-implant) and Actiq (I am on less than 1/2 the dose I was on pre-implant).
Comparing pre-implant with meds to post-implant with SCS & reduced meds my pain level was decreased from a 7/8 with weekly spikes to a 9, to a 4/5 with occasional spikes up to an 8.

The stimulator definitely helps quite a bit, but I'm not sure how realistic it is to say that nobody would ever need pain meds again post-implant. I've met many, many people who have one, but while most of them have had significant reductions in their pain meds, I've yet to meet someone whose pain was well-controlled all the time by the SCS with no pain meds at all. That's not to say that you couldn't be okay without pain meds, just that I would be a little wary about a doctor who claims that he would NEVER consider prescribinh ANY patient with an SCS narcotic pain meds. Also, you really need to make sure that at a minimum he is willing to prescribe meds to control the post-op pain. I thought immediately post-op they have to use narcotics b/c you can't take anti-inflammatories for at least a few days to a week, but perhaps your surgeon has experience using something else. I don't know what the research says, but it seems to be that especially in skinny people that the battery pack can be very irritating & difficult to get used to. Depending on where your pack is implanted & where your leads are located, they sometimes have to tunnel through a lot of connective tissue. That can be immensely painful & I would hope that the surgeon would take that into consideration for at least the first month.

I would guess that whatever meds worked pre-implant would be the best choices post-implant, but I'm not a doctor.

Negatives: post-op pain, took BS 12 months of re-programming the battery 1x/month to find a set of 4 programs that gave me the maximum benefits, there is a nerve trapped between my pelvic bone & the battery pack that gets really irritated when I put any pressure on it (sitting back in a chair, lying on my back a floor or a yoga mat, etc.), disrupts my sleep so I have to turn it off at night, can't drive with it turned on so driving's still painful, cost of unit

Well, hopefully that helps some. Like I said, I would do it again in a heartbeat. It got me off the vast majority of my pain meds & significantly reduced those I still take. That was my main goal with the SCS. Good luck with everything. Hopefully it will work for you as well as it is working for me!

blessings,
frances

modelmaker
Regular Member


Date Joined Feb 2009
Total Posts : 168
   Posted 4/23/2009 1:44 PM (GMT -6)   
frances,

Thanks so much for your prompt and helpful reply. Was your post-implant pain due to your specific condition or is that just to be expected in most implant situations? Do you have the model with the wireless recharger that is placed outside over the implanted pulse generator? If so, how well does that work? How long will the implanted unit work before it needs a recharge? How long do you have to wear the external charger for each recharge? I know the answers to these questions are variable depending upon each personal situation but I am just looking for some overall approximates.

The manufacturer's literature does not claim to eliminate the need for post-implant meds. The doc said that if meds were indicated they would not be like the ones I am on now (oxycodone). I think he meant he does not prescribe narcotics for some reason. Are the pain meds you are on now narcotic? Do you think they provide adequate pain relief in conjunction with the SCS?

I know I'm asking a ton of questions and I appreciate your time to respond. One last one. Do you think the trial was indicative of the final implant? Was the trial pain relief less than what you actually experienced post-implant?

Frances, I really appreciate hearing from you and sharing your experiences with me. I hope my outcome is as good as yours eventually turned out.

Best regards,

Alan

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2197
   Posted 4/23/2009 4:06 PM (GMT -6)   
Was your post-implant pain due to your specific condition or is that just to be expected in most implant situations?
It was a combination. Lots of people have post-op pain for a week or so. I am a slow healer due to elevated SED rate, so it takes me longer than most.

Do you have the model with the wireless recharger that is placed outside over the implanted pulse generator? If so, how well does that work?
Yes. Works perfectly. They just did a voluntary recall & swapped out the older chargers for new ones that can't burn your skin even if you sleep with it on (though I still don't recommend sleeping with in on if you use the double-sided tape. They also give you a cloth pouch & that's much more comfortable to sleep in. Of course, BS has always & continues to recommend that patients never, ever sleep with the charger on. I don't always follow the rules. :)

How long will the implanted unit work before it needs a recharge?
Depends on how much of the time you have it on & how high you have it turned up. Mine usually last at least a few weeks, but some people's last longer or shorter.

How long do you have to wear the external charger for each recharge?
Depends on how far run down it was when you started charging. Usually 6-8 hours. Sometimes when I run it down to nothing, I need to repeat 2-3 times (i.e. 8 hours on body, 6 hours in cradle, 8 hours on body, 6 hours in cradle, 8 hours on body -- for a total of 36 hours)

Are the pain meds you are on now narcotic?
One is. Lyrica is an anti-convulsant prescribed for nerve pain. Actiq is a narcotic. I was on both before the implant. I am on lower doses now, but still needed something. I tried non-narcotic options, but either they didn't work or they had severe side effects.

Do you think they provide adequate pain relief in conjunction with the SCS?
Yes. I am not pain-free, but I am able to participate in all the major life activities necessary to go to work, care for myself, and participate in some social activities.

Do you think the trial was indicative of the final implant? Was the trial pain relief less than what you actually experienced post-implant?
Trial was less relief than the final implant, but it was clearly helpful. I was expecting it to be more helpful during the trial period than it was, but my PM insisted that it was more that good enough results from the trial to proceed with the implant. I was slightly better during the trial, but hardly decreased my pain meds at all during that time. I wasn't sure it was a success, but it turned out my PM was right! So I guess the moral is to find a PM whose done a lot of these & then trust him as much as possible. :)

modelmaker
Regular Member


Date Joined Feb 2009
Total Posts : 168
   Posted 4/23/2009 4:56 PM (GMT -6)   
Frances,

Thank you so much for your very thorough answers to my questions. I really appreciate your help and advice.

Best,

Alan

Danimal
Regular Member


Date Joined Mar 2009
Total Posts : 80
   Posted 4/24/2009 4:35 PM (GMT -6)   
Hi Alan:

I'm not sure if my posting will help you because I have a stimulator but it isn't a Boston Scientific model. I have a Medtronic RestoreUltra. I have a blog about my experience, if you are interested, with pics. of my incisions and all sorts of discussions about SCS-related issues. Some of the issues are the same, regardless of the company.

Come visit if you are interested...

http://www.chronicstimulation.blogspot.com/

PS- I had my stim. put in on 1/16 so I'm in the recovery period. Still have to take my pain meds. I would not advise the procedure if your hope is to be 100% without pain meds. However, it may be worth it to you to at least give the trial a go if you understand that taking pain meds will prob. still be a part of your treatment.

Let me know if you have any questions!

Danimal

newanpainful112
New Member


Date Joined Apr 2009
Total Posts : 15
   Posted 4/25/2009 9:21 AM (GMT -6)   

 Hi:

 Yes I have a spinal cord stimulator by Boston SCI. If you think it is the answer to all your pain I don't think it is. It may work for you. But it has not relived all my pain it did nock it down a few notches. It took me from a 10 to a 7 on scale of one to ten. I can not sleep with it on and you can't drive with it on either.  But if I had to do all over again I would have to rethink it. To recharge it you have to tape the charging unit to you stimulator and can take up to 8 hours to recharge it.

Good luck on what ever you do   turn


modelmaker
Regular Member


Date Joined Feb 2009
Total Posts : 168
   Posted 4/26/2009 7:08 PM (GMT -6)   
Hi danimal and new,

Thanks for your responses on SCS units. Danimal, I took a look at your blog and found some very useful, firsthand experience which is what I am looking for.

I have been through 4 complete open back surgeries with long incisions so I am familiar with post-op pain and recovery. I guess my issue now is this: I have chronic pain but I am not sure it is of the level of intensity that took you and others to a stimulator. It's bad enough that I do need opiate pain meds. If I could get enough relief to get off the opiates using the SCS I would be happy. I don't know yet whether that's possible. I know it is not complete pain relief but rather an improvement. Are there non-opiate pain meds that you have found adequately effective post-implant?

You mentioned you can't sleep or drive with your unit on. Why is that? Does the tingling sensation keep you awake? Is it so distracting that driving is a problem?

I am curious as to placement of the pulse generator in the front or lower abdomen. How did they run the wires from there back to the leads? Did they tunnel around the waist area? I hope these questions are not getting too personal but as a potential candidate I would like to know how it works.

Thanks for your help.
Modelmaker

(yes I do make models when my pain level permits. I make R/C boats and planes for my grandson)

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2197
   Posted 4/27/2009 2:45 PM (GMT -6)   
Different people have their battery packs placed in different locations. Mine is in my buttocks & the leads run up my spine to my neck where they are attached to C2. It does need to be implanted in a fat pocket but other than that, every surgeon does it slightly differently. That question is probably best answered by your surgeon.

Sleeping
I don't know why I can't sleep with it on. It doesn't really feel uncomfortable. I can lay down & watch TV with it on just fine. I just can't sleep with it on. You do feel the tingling feeling when the SCS is on. It is noticeable. Maybe that's why. I have met a few people who can sleep with it turned on, but there are a lot of others who can't. What does help me some it to turn it on about 1 hour before bedtime. There is some residual effect from having it on for a while after it is turned off.

Driving
It is not recommended that anyone drive with the SCS on b/c the amount of stimulation & the part of your body that's stimulated can jump. Meaning you could have your SCS set at, for example, a level "4" and when you turn your head to check your mirrors it could jump up to a level "10" which would be very distracting. Your mind would prioritize the change in sensation is being more important than what's going on with the other cars, even though it is a safe sensation & the cars could be deadly. You would be find again in a couple of seconds, but accidents only take a second or two to occur. Beyond the manufacturer's recommendations, if you are driving with your SCS turned on, it can be considered "reckless endangerment" and may carry legal ramifications. So, no driving with your unit on.

Danimal
Regular Member


Date Joined Mar 2009
Total Posts : 80
   Posted 4/27/2009 7:48 PM (GMT -6)   
Hi Model-

Let's see..as for driving..it's a safety issue. You can get a surge in stimulation when you turn your head quickly so they like you to have it off so as not to surprise you and cause an accident.

I actually sleep with my stimulator on every night. The stimulation does increase when you lay down because the leads are closer to your spinal cord. I end up turning it down a little bit but it helps me sleep and does not keep me awake.

I chose to have the generator implanted in my abdomen because I have very little fat on my flank area and I also was weary of having another scar in my back. I also had an appendix scar in my belly so they were able to open that up and use that. My medtronic rep told me that medtronic did a study of load weight on the generator in the back vs. the abdomen and the study showed that the generator and cable absorbs a lighter load when implanted in the belly than when in the back/buttock. Something to consider..but, of course, it's a personal decision.

They tunneled the cable from my paddle around T9-T10 area, over my ribs and around my waist. I can see it over my ribs in the back (picture of this on my blog) but cannot see it in my waist area. It just felt bruised there and I wouldn't want anyone pinching that side of my waist!

I think if you're in enough pain to be on long-term opiates, you are def. in enough pain to do the trial procedure. Making a decision about this surgery really comes in 2 steps. First, decide whether you want to go forward with the trial implant (temporary leads for 3-7 days to trial the stimulator). If you do the temporary implant and notice a big enough difference for you, then maybe you will want to do the permanent implant. If not..well then, you have your answer! (the trial stimulator is implanted via an epidural needle. it's a fairly low risk procedure).

Let me know if you have other questions, ok?

Best,
Danmal

BionicWoman
Regular Member


Date Joined Jul 2008
Total Posts : 243
   Posted 4/28/2009 3:38 AM (GMT -6)   
Just to offer a little different perspective, I also have an SCS and I specifically chose not to go with Boston Scientific. I have the Medtronic RestoreUltra, but if I hadn't gone with that implant, the ANS implant would have been my next choice. In my opinion, the Precision Plus implant isn't the best implant currently on the market, it doesn't offer near the flexibility and options that Medtronic and ANS implants currently offer, and I find Boston Scientific's advertising/educational materials questionable at best and blatantly manipulative at worst.

I also wanted to comment on some of the other questions.

Sleeping:

The first 6 months or so with my implant, I wasn't able to sleep with my stimulator on without waking up with a headache. I don't believe the headache came directly from the stimulator, though; I think it came from restless sleep because I wasn't accustom to the stimulation. My body has adjusted over time and now I sleep with it on sometimes and off other times, with no noticeable side effects. Whether I sleep with my stimulator on or off really just depends on whether it's turned on or off when I happen to fall asleep.

Medications:

I still take narcotic and non-narcotic medications. The doses of the medications I still take are about 50% of what they were pre-implant and I eliminated a LOT of medication completely, so my total medication intake is about 25% of what I was taking pre-implant. I wear a Fentanyl patch and take an anti-inflammatory daily; I also have breakthrough medication and muscle relaxants to take as needed. For the moment, my stimulator plus my medications seems to be my "magic blend" and I spend about 90% of my day completely pain free. That said, there are many doctors out there that won't prescribe narcotics if you get an SCS and others that don't consider "pain free" to be a realistic goal; you really need to discuss those long-term management issues with your doctor in-depth, just to make sure you're in agreement with their policies and that not going to find yourself left high and dry.

Driving:

I choose to drive with my stimulator turned on, even though the manufacturers recommend turning it off. I think it's a very personal decision and you can't really make a final decision until you have the permanent implant, know how the stimulation is going to affect your mental capacity, and can evaluate stability of your stimulation pattern. For me personally, uncontrolled pain has a more negative impact on my ability to think clearly and react to unexpected situations than the stimulator and my stimulation pattern is very stable.

As far as the legal issues if I were to have an accident as the result of driving with my stimulator turned on, Frances is correct that I could be charged with reckless endangerment. However, in most places if you choose to drive while taking narcotic medications and you have an accident, you could be charged with driving under the influence. The most important thing is to take a serious look at how all of these very individual factors impact you and make a responsible decision each and every time you choose to get behind the wheel.

SCS#1
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/12/2009 9:21 PM (GMT -6)   
Just as a side note Bionic woman, the BSC system is the latest on the market and the only company able to steer current. The other companies cannot do that making the stimulation less comfortable and more chopping feeling. Many people are actually removing the Medtronic system and replacing it with the Boston Scientific one. I am glad you have good results with the MDT system, but I think the information is not really accurate.

modelmaker
Regular Member


Date Joined Feb 2009
Total Posts : 168
   Posted 5/13/2009 2:49 PM (GMT -6)   
Hi Bionic Woman,

I am curious to know why you think the Boston Scientific advertising is misleading and manipulative? Have they made claims that are not true? Have you had a bad personal experience with Bos. Sci? Since you are the only one here who has a really negative view of this company I would like to know a little more of your experience with them. I would like to make a fully informed decision.

Modelmaker
Degenerative disc disease, 4 back surgeries, fused from L2-S1, instrumentation. Being treated for chronic pain. Oxycodone 30 mg. IR. Candidate for SCS in the future.


modelmaker
Regular Member


Date Joined Feb 2009
Total Posts : 168
   Posted 5/13/2009 4:44 PM (GMT -6)   
SCS#1,

Is there a way we could take this conversation private? Phone, email?

Modelmaker
Degenerative disc disease, 4 back surgeries, fused from L2-S1, instrumentation. Being treated for chronic pain. Oxycodone 30 mg. IR. Candidate for SCS in the future.


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 5/13/2009 6:20 PM (GMT -6)   
As you know, I just started my trial with the Boston Scientific Precision. I am not familiar with the other brands. I asked the rep who was present during the implant or the leads and he was able to answer my questions. He told me that if the unit fails in any way before 5 years, they will pay for the surgery to have it replaced. He stated that teh battery should last at least 5 years and hopefully longer. They are doing trials on a 15 to 20  year battery. I will be talking to the rep every day so if you have questions I would be glad to ask them for you. As I stated in my post, the instalation of the leads were easy. No sedation and very little pain. The rep was present and was willing to take whatever time I needed. As per 1 brand over another, I just want one that will work. My PMS stated that if he were going to have one or one of his family, he would use the Boston Scientific. This was the first one he has implanted since moving his practice to Oregon from Mass. They told me up front that their goal was to reduce my meds and pain by 50%. I believe that to be a realistic goal. Time will tell. I believe that this is going to be like everything else, it will depend on the patient and each senerio will be different. What works for me might not wok for you or for others. I have been dealing with the back/leg/foot pain for 11 years and being pain free has left my expectations. I just want to be able to function on an everyday basis without having to shut down due to pain. There are things I will never do again but that does not mean my life won't be liveable. I still work way to many hours and someday I will have to limit that. I put in a min. of 60 hours per week. I just deny the pain until night time. Anyway let me know if I can be of any help.

painpatient73
New Member


Date Joined Aug 2009
Total Posts : 1
   Posted 8/6/2009 3:15 AM (GMT -6)   
I had my Precision Plus stimulator implanted 8 weeks ago. First off, let me say that JUST LIKE medication, this is a PAIN MANAGEMENT TOOL. That said, NOTHING will COMPLETELY RELIEVE YOUR PAIN. My unit takes me from an 8 to a 4 on the pain scale, which is considered a success. I would advise you to research your options, as there can be problems or complications with any surgery, and your insurance and/or doctors may require you to consult a pain psychologist (I know my insurance, Aetna, did) for their approval before proceeding with the trial. I wish you much luck whatever your decision may be!

Ed

Krista M. Blas
New Member


Date Joined Aug 2009
Total Posts : 1
   Posted 8/18/2009 6:24 PM (GMT -6)   
I am scheduled to have the SCS trial done on Monday and was wondering if anyone could offer a little advice. For instance is there any "recovery period" with it or with the implant itself. Any imput would be appreciated. Thanks, kmfblas

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 8/18/2009 7:42 PM (GMT -6)   
Krista, I have the Boston Scientific and will be glad to share my experience. The Trial is not that dificult physically. There is a small incision that they use to insert a tube. Once the tube is in place, they feed the wires through the tube and plave the lead(s) on the nerves. Then they remove the tube. The most uncomfortable part of the trial was not being able to shower for the week. They told me that they did not want to take a chance on infection. I still found a way without getting the area wet. The trial for me was not as accurate as the actual implant. The recovery from the trial, I went back to work the same day. After the implant, I went back to work the second day. Big mistake and because I did not have a good PMS, my recovery was set back by weeks. I ended up with an infection that the PMS did not treat. Some say they were off work as long as 6 weeks after the implant. It took me several months before the pain was low enough that I decided the implant was worth it. This was due to the Doctors lack of care and professionalism. You get to chose where the battery implant will be placed. I choose to have mine in my lower back (towards my right side. I normally sleep on my left side so having it on the right side does not interfere. I am so glad I did not have it placed in my buttock or hip as my belt or sitting would not be comfortable. Just my experience. The incision for my implant was about 3 to 4 inches where they implanted the battery. Then the incision where they placed the paddles was about 3 inches. They were not too bad until I ended up with an infection. I hope this helps. Let me know if you need more information.

Dyanna_Hunter
New Member


Date Joined Nov 2009
Total Posts : 1
   Posted 11/2/2009 2:25 PM (GMT -6)   
So glad I found this site!

I just came home from my neurosurgeon's office and he gave me literature and a CD to familiarize myself with the Boston Scientific Precision Plus. I am very excited about this approach to pain control as I have been suffering for 19 years with back and sciatic pain.

Right now I have nothing to contribute to this discussion, but I wanted to register and pop in to give a big thanks to Frances_2008 for all the answers she provided to modelmaker's great questions.

BoltsandScrews
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/11/2009 10:53 PM (GMT -6)   
Hi - just found this site and signed on.

Two days ago i received my trial stimulator.. After may years of back pain, 2 back fusion surgeries, injections rhizotomies, etc etc. and then intense leg pain, I had to do something.

Guess I was hoping for a quick fix. It seems to "mask" the pain while still feeling the pain just not as intense - is this "normal"?? I guess I was hoping it would take the pain away. Don't know whether it is better to have it turned up higher so I won't feel it as bad or higher makes it worse??

This site also seems to be more positive about the procedure than other sites. I feel so "alone" so reading all of this has been very helpful.

Good Luck Dyanna - I too am trying the Boston Scientific Precision Plus.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2197
   Posted 11/11/2009 11:30 PM (GMT -6)   
Bolts,
It sounds like you might not have it turned up high enough. It is a balancing act, though -- and it does get easier as time goes on. For me, the higher I go, the less I can feel the pain, but it means that that vibration/sleeping feeling is stronger. That sensation, as it gets stronger, replaces more & more of the pain. Unfortunately, at a point I end of physically shaking -- which can hide the pain pretty well, but is itself quite uncomfortable.

I will say that the longer I had it on, the less I needed it. Eventually I got to the point where the pain was under control & I was able to start the stimulator at the first sign of pain, rather than trying to bring it back under control after I was totally miserable.

But everyone is different. If you don't feel it is worth the small change in your sensation of pain by the end of the trial, I would say not to go forward with the permanent implant. I have met people, desperate for relief, who went forward even though their trial experience was not good and they really regretted that decision.

Personally, I really like mine a lot, but there are drawbacks to it & it doesn't help everyone. The permanent implant, from what I've heard & experienced myself, does provide a BIT more relief than the trial, but it is fairly comparable.

Hope that helps.

take care,
frances

BoltsandScrews
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/12/2009 12:18 AM (GMT -6)   
Thanks Frances~

I know what I was going to ask also - is it better to turn on before the pain begins or wait until it starts??? or is it a personal preference. I know the doctor was also hoping to get this to cover my lower back, but it's like I have this black hole back there - just my legs are covered.. ..

Thank you again.....I'll be back I am sure with more comments and/or questions. Also if I decide on the permanent one, i have to wait 3 weeks or so until it is done - dr wants me to heal thoroughly from the trial.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2197
   Posted 11/12/2009 12:49 AM (GMT -6)   
That's up to you. If you wait until you are in pain, don't wait until it gets horrible, though. Turning it on at the first sign of pain will be more helpful. When I first got mine, though, I had it on about 14-15 hours per day. I would turn it off to drive, to sleep & when I was getting my hair washed -- that's about it. Same thing when I got my permanent implant for the first several months. I would change programs depending on whether I was sitting, standing or lying down & I would adjust the level of stimulation throughout the day, sometimes turning it pretty low, but I had it on almost pretty much all the time as long as I wasn't sleeping.

If you really aren't feeling much stimulation, you might try giving your surgeon a call. I had that problem 2 days into my trial & it got it reprogrammed to allow higher levels of stimulation. I'm so glad I did that because it really helped me know what kind of relief was possible.

I did have it set quite high & it would jump up fairly often when I first got it. I was sore at the implant site for the battery pack & so I would spend a lot of time sitting on my bed whenever I could since it was the most comfortable. On one occasion I had brought a plate of spaghetti to eat & was sitting on my bed when the level of stimulation jumped up. I literally threw my plate of spaghetti across the room ... sauce & all. Yeah, well, I ended up getting a new computer keyboard out of that. :) So there is a downside to having the stimulation turned up high enough to get some relief from the pain. But, that icky sleeping limb feeling is still much preferable, imho, to being in crippling pain.

best wishes,
frances

Post Edited (Frances_2008) : 11/11/2009 10:58:43 PM (GMT-7)


BoltsandScrews
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/12/2009 8:18 AM (GMT -6)   
Thahks again Francis. I go see the rep of the comoany today as she said she would like to reprogram what she could to see if she could get better coverage and a better program without having to go into the site again.'

Is your back covered by this or just your legs??

Thanks and have a great day.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2197
   Posted 11/12/2009 2:58 PM (GMT -6)   
Mine is implanted at C2. So I get the following coverage:
Program 1 -- back of neck & back of head
Program 2 -- back of neck, right side of head, right side of neck, right shoulder & arm down to fingers
Program 3 -- back of neck, both shoulders, both shoulder blades
Program 4 -- more on right side, but both arms & both legs get some coverage, minimal coverage back of head


I am hoping to get a second set of leads that runs to my low back, but I don't want a second battery so I'm waiting for the FDA to approve the newest model that can support 2 cords with leads, rather than one. But it hadn't even made it to first round trials last I checked, so I'm just trying to hang on until then. :)


Hope the reprogramming gives you better relief!
frances
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