My battery is a 'pain'
 

At the moment Im just over 7 weeks from surgery. My battery is on my left butt, well more on my hip/waistband area. The actual incision has healed and looks 'sealed' however, I find the actual battery 'sore'. When I lie down I can nearly feel the battery digging into my skin. But moreso when Im lying on the couch or slightly sitting up in bed. You know how when you sit, it kinda 'folds' slightly and it gives me the oddest feeling. I feel as if its going to push up or move even:eek:. I also notice that when I feel around the battery, which is rare as I cant stand the feel of it in my body, well not yet anyway, I notice I have little lumps, or well I dunno what to call them only lumps around the actual battery. Is that scar tissue do you think? or just part of me!? Today we went out for lunch and I was able to sit longer than usual because I have my stim on yay!!!!!! but after a while I did feel odd with this feeling of the battery in my back. I always bring a cushion to lean against as I sometimes find the chairs or seats are uncomfortable, or at least not comfortable enough to cater for my back!!. I do hope that what Im feeling is 'normal' and that in a few months I wont even notice it is there!!! just the pleasant feeling of pain relief!

Well...... a subsiding of swelling
 

Hi Jackie-

I noticed quite a bit of tenderness until about week 9 after surgery and the swelling of the invasion of my body had begun to abate. Maybe with reduced swelling, you will settle in to your body rhythm with the implanted device. I have felt of the battery site, and notice what I figure is scar tissue. It is just part of the package I figure. Maybe that is what you are feeling as well????

Glad you could get out to eat.... what a liberating effect that has on the psyche!!

Hoping the best,
Mark56:hug:

I've been having the same problem with my battery, Jackie. The one on my left is sore and I'm debating whether it's hip pain or the battery. I know they said I had scar tissue on my left side from previous surgeries so hopefully that's not being aggravated. What's weird is that the battery on the right side doesn't seem to bother me. Hopefully as we get to Mark's 9 week mark (pun intended), we'll see a let up on the soreness, too.

It's just too weird how we're both dealing with so many identical issues....:eek:

How odd Fiona :)
 

Hi Fiona, it is strange how we both have similiar issues with our stims. Could it be that we are of the same age(or at least I think we are) I was 50:eek:in May!! but loving it all the same:Ddont really have a choice!. Im hoping too that it is some scar tissue. Went out for a walk today but I must say I dont find it too helpful for my the back at the moment. I did turn it up 'high' but couldnt stand straight as my legs were so wobbly, well felt it, if they didnt actually wobble, if you know what I mean. So had to turn my stim back down again, about 4 bars now, to help me walk properly. I will say though that it is helping with the burning feeling I get in my legs/thighs. Its relaxing for me when Im sitting down or lying down. While I was recharging yesterday I turned my stim off, dont know why but I feel safer while Im charging, anyway, I had the usual pain/burning/tingling feeling in my legs which I havent really experienced once the stim is on. So thumbs up on that score. But my back isnt getting a lot of benefit really, but time will tell, Im still coming to terms with the whole sensation thing.
Im still putting a surgical bandage on my incision over the battery because Im afraid that I will damage the skin covering it, as Im not convinced that it is 'deep' enough. but then whom am I to know how deep it should go, thats why we have Dr's :rolleyes:

Mark I will keep 9 weeks in mind and hopefully I will get past this feeling I have. Id hate to think I will have an extra pain after having my stim implanted, couldnt take that!!:eek:

Hope things get better for you!
 

:hug:Jackie, I am sorry you are having trouble with your stim battery area. I remember all of that very well. The soreness did finally go away although since I fell it is back but I think it makes sense. If you notice anything soreness or that it looks weird definitely tell your doctor because sometimes there is irritation but it should not be too painful. The first stim they put in was really close to my skin and it stuck out which to me was painful so the revision they moved it in deeper but I think it is much worse now (again that could be because everything is messed up). Well, I hope your incision feels better very soon take care :hug:'sTara

Thanks Tara:hug: I will certainly keep an eye on it to make sure it doesnt 'stick' out:eek: .....Hope your well and that you will get sorted asap!!:hug:

Jackie: I'm thinking now that the pain we're feeling in the battery area may actually be inflammation based. I took a steroid for allergies yesterday (steroids are also a great anti-inflammatory) and the battery site felt MUCH better all day until the steroid wore off. So, I'm thinking that it's inflammation from the surgery and that we need to give the inflammation time to go away. You could try an over-the-counter anti-inflammatory and see if that helps. I can't as I have to take so many to get results that it gives me horrible heartburn.

By the way, I'll be 52 in November.

Thanks Fiona :).....yes I do take an anti-inflammatory too. But you know you could well be right. Its still quite sensitive to touch and if I lean back against it too. My husband said it does look a bit bruised still. Im hoping thats all it is and it will pass for us both very soon.
Sure we are only young ones you know:D Although at times I feel 90:D

Time to heal and time for swelling to fully abate
 

Yep as Jackie and Fiona are hitting on target, inflammation and swelling due to the recent surgery can sure be the aggravator. Give it time and the swelling should abate as it has with me. This doesn't mean that foreign body [sorry PJ] in my backside is an unwelcome accompaniment, but there can be some soreness even when the surgical pain and swelling has fully abated. Probably we will always be sensitive to the area, but less so over time as with me. Yep.

Mark56 PJ:grouphug:

Two things concerning your battery
 

Hi!
Yes, I agree with lots of the above. I would also like to add two things:
1. Make sure you do not have an infection brewing. I know this is rare, but it is worth checking. Look for redness around your incision and battery site. Also, check if it feels warm to the touch. If either of these, call your doc and have the doc check it out.

2. As for the inflammation, I'd add the thought of putting ice packs on the site. It won't harm your battery or mess with it, like heating pads will, and it might help with both the inflammation and the pain. (I like the gel kind, which are flexible!)

I have had my spinal cord stimulator since 2008 and I still usually sleep on my rightt side because of that. Also, if I'm lying on my back, I make sure the area just above that battery site is padded and supported with a pillow.

Just some thoughts!

Not having a good day :(
 

Thank you all for your advice, really appreciate it.

Today Im having a bad day. I have this awful pain up in my back:eek:higher than usual. Id say parallel with my elbow or above, so not so much my lumbar. Its like a dagger in my back, havent experienced anything this high up before. Im wondering if maybe the lead is doing it? gosh this is all I need. My husband thinks Im overdoing it:rolleyes:but Im not really. Ok I did take one of our dogs (a Westie) who bless him had a hip operation 2 months ago too while I was in hospital. He is hobbling along and me following behind. But I know its not from that because I was exceptionally careful. My Dr did say I could do it, but gently, which I have. Im feeling really low today with this pain. I feel Ive stepped back a bit. Ive my stim on full tilt (well what my body will allow) to see if it will help this pain, but its much higher up!....any ideas?

Thanks guys:grouphug:

Welcome GoRockies
 

Welcome GoRockies and thank you for chiming in with helpful hints re the generator/battery!
Go Rockies,
Mark56:)

A New One on Me
 

Hi Jackie, and I am sorry to learn of your piercing pain high up. I have not had high up pain since the healing of the laminectomy site for implant of my stim. As I recall, yours are percutaneous leads, so I don't have much by way of personal input, unless you twisted too much or some such! Give it a rest and see if that subsides. Here is hoping it does! If not, you may need to get in to the Doc to have them opine on it.

Mark56:hug::grouphug:

Hi Jackie
 

My Dear Friend :(
I'm sorry to hear of your bad day. What you describe sounds hauntingly familiar. We both have the exact same procedures. Does this pain feel like it's coming from your mid-back close to where the incision for the leads is? Also, do you notice a strange sensation in this area when you turn on your stimulator?
I have been dealing with this and the way I describe it is like a 'pulling' sensation when I turn on the unit. I can feel a little 'knot' up there where the leads were placed thru the incision. When you said it feels like a 'dagger', that caught my attention!
The really strange part is that I only feel this when I try to use 2 out of my 3 programs. It almost feels as tho one of the little anchors on the lead is pulling at the muscle. It's so uncomfortable in fact, that I've only been using the one program that this doesn't seem to affect.
From what I've come to believe is that the other 2 programs (which cause the pulling feeling) are somehow using shared electrodes and the one program that does not cause any painful sensation is coming from a lead which does not use the electrodes the other 2 programs use.
I haven't had this confirmed yet and I ended up canceling my tweak session a couple of weeks ago because I was not able to make the appointment at that time.
Try turning your unit off for awhile. Maybe 10, 15, 20 minutes - then turn it on and see if you can 'feel' the sensation I describe where your incision is in your mid back. Or even if you don't feel the exact sensation I describe, just see if your pain subsides after your unit has been off for awhile.

I doubt this is anything for us to get too uptight over, but I do know that it can bring us down. It IS frustrating. I've had many highs and lows here as of late, but now that I've ditched the Neurontin, I can already tell that my mentality is starting to even out.
I've had my unit for 6 months now. During this 'Neurontin' mentality, I have allowed myself to slip into some sort of fear and doubt about whether or not the SCS is really going to get back my quality of life. I'm still struggling with trying to figure out where I stand with all of this and I have hesitated to post about this because I didn't want to bring everyone else down.

I'm going to start a new thread and try to target people who have had their units for longer than we have and see if they will give more input. I really wish they would participate more! My only other option is to have to scout out other patients from different venues to get better feedback on those who have longterm testimonies to help us with.

Hang in there my friend, I too have been very down about several things.
Not having answers and the fear of the unknown. It's been a battle lately to not completely lose my joy.....but I'd like to be able to put the blame on 'bad medicine' and move on.
We'll stick together and get thru this
Rae
:hug:

Hi Rae :hug:

Thanks for you thoughts. Im sorry to hear that you also have this 'dagger' feeling in your back. I dont however have the 'knot' which you mention, which doesnt sound too pleasant either. The pain is located beside the incision wound for the leads insertion. Its painful when I move or turn or bend so Im thinking that maybe it could be the lead hitting off something:eek:but then Im thinking well its now 8 weeks today since I had surgery and shouldnt those leads have scarred in by now:confused: which means they shouldnt move. How confusing. Well Im going to give it another few days and over the weekend. If by Monday, my Consultant will be back in his rooms on Monday, I still feel this uncomfortable 'dagger' in my back I will certainly contact my Dr and see what he thinks. I did take some extra painkillers yesterday to see if it would subside, but its still there today:(

Rae Im so pleased that you have finally gotten rid of the dreaded Neurontin......Im so glad you are feeling more 'yourself'. I remember those dreaded meds and Lyrica:eek: I felt constantly hungover and I couldnt remember things I did or what I was even talking about, I was soooo confused while on those. But as soon as I finished it was as if the fog had lifted and I was able to feel more 'alive' . It certainly makes you become more normal again and not so fogged up.

It would be great to have some more people on here who would have their stims longer so that we could pick their brains, however, between all of us at the moment we are certainly hitting all the right questions and worries. Its amazing how we can pull together and help each other out.

I remember when I was first introduced to the SCS I was given a DVD to research. So on this DVD they talked about a forum for discussion which might be of benefit. I of course was very interested in this new system and decided to go on this forum and see what people had to say.
Well Im sure you have guessed by now, the site was FULL of people with positive remarks about the ANS....naturally as it was an ANS forum:rolleyes:No matter which thread I went on, there was absolutely NO negative posts whatsoever. Which I did think was quite odd. But then of course I realised that this was a PRO SCS forum advertising for the company. So its interesting to come on to this website and see both the good and bad side of the stim. Its more real compared to what I was on. Its so beneficial to anyone who might be in the early stages and want and need advice.
So maybe Rae if you do decide to start a new thread we may get some more people out there who can contribute to this great website.

Take care and thanks

Jackie:hug:

You've been a huge 'boost'....
 

Jackie,
Ever since you shared your experience with the Neurontin/Lyrica, it has really helped me to see in terms of a possible 'bright' future...:)
I mean it! There for awhile, I was really beginning to believe that this is IT. The end of the line. And it certainly is NOT what I thought I'd end up! I had higher aspirations in life.
You have an aura about you which shines like a beacon from across the sea! :)
You seem happy with where you are at (just turning 50) and enjoying your precious grandaughter. I'm pretty much riding your coat-tails :p and I'm picking up on your positive vibes! I'll be "Nana Rae" in 2 months! I have aLOT to live for and I just want to be at my best. My daughter needs me! I WANT to be able to be at my best!
So, your 'bad medicine' experience has helped me to see that this was only a bad chapter in my life. I can make the most of my 'new' chapter.

You really are precious and I hope you know that!! :hug:

I will be very interested in what your doctor has to say about this discomfort in your back.

Yes, trying to find 'real people' feedback was not an easy thing in the beginning of this endeavor. The only websites I could seem to land on were 'commercialized' and didn't seem genuine.
WE are GENUINE.
I am so very grateful for what we have.
I come to this forum like good medicine! It really is therapeutic. Even just sending a smile to someone - lifts my spirits.

I hope your weekend goes well.
Even if the pain subsides, maybe it would be a good idea to bring it up at your next visit just to see what doc has to say.
I will do the same.

Thank you for being YOU
Rae
:hug::grouphug::hug:

Painful sensations with stims....
 

:hug:Jackie, I am so sorry that you are still hurting, and I know that feeling like the stabbing because it happens when my stim is hitting places it should not be. I was debating on whether to comment because I feel like I don't want to make things worse for anyone and since my stim is messed up I feel like I really should not be giving any advice to anyone. But, I do think you should def tell your doctor, and your doctor too Rrae. The only time I got the sharp pains is when my leads moves OR also when my settings are not hitting the right place and I need to be reprogrammed. When I look through everyone's threads and experiences I am shocked at everything you all can do because when I first got mine, I was not allowed to do hardly anything and even though I was extremely careful as you know things still happened :( I am not saying this to scare anyone but I just want to make sure that everyone is very careful about not overdoing it (especially when you start to finally feel better because the stim is working so great and you think you can do anything ;)). I really think its important to keep track of any pains whether major or minor so that you can tell your doctors and your stim reps. Again, not trying to scare anyone its just you do not want to end up like me and be on your third stim surgery ;) Take care and I hope you get to feeling alot better very soon :hug:'sTara

OH MY GOODNESS......Im getting such a BIG HEAD now Rae:D

Im so glad that my little input is helping somewhat.

Today Im feeling a lot better. The 'dagger' doesnt seem so bad now, as Im taking some anti-inflammatories as well as my painkillers. At the moment I cant see myself dropping those meds....but I will wait til I have the next app with my Rep. my Dr will also be there so we can discuss it all then. At times when I turn swiftly it catches me slightly. But its definitely better than it was on Wednesday:)Which is a relief, because at first I thought I had maybe caused some damage, or worse still that the leads had moved:eek:but I think its not that bad, well now thats its not so severe that is. Stim is definitely helping my legs and the burning and searing pain down them, but unfortunately Im not feeling it so well in my back. That heaviness is still there, but you know 50% is a whole lot better to cope with rather than 0%.....I know its still early days so Im hopeful that things will continue to improve. Ive just had a call from my GP to say that Im anaemic!!!!! great!!!!!....I had some blood tests done on Wednesday and apparently I have a low blood count ......8 Im told!!!! again!.....it should be somewhere between 11 - 16 So now Im on some Iron tablets and some multivitamins to boost me up!:rolleyes:I will be jumping around the place soon:D

Tara you neednt worry about the information which you share with us. Its all valuable whether good or bad. We do NEED to know all the pro's and con's. If we were all to be positive all the time, wouldnt it be strange;)so yes continue with whatever you have to offer whether you think it might scare us or not. Your imput is so important to us all:hug:



Jackie :grouphug:

Forgot to mention that when I saw my dr. yesterday and told her I still felt very sore and quite a bit of inflammation around the battery sites, she said it was due to fluid build-up that happens when they do the surgery and that it should go away, slowly, over time. Got me wondering if you're experiencing some bad inflamamtion??? Maybe you did something to aggravate the area without remembering/realizing it??? Just a thought.

Yes Fiona I think thats exactly what I have. My husband said that the site around the battery is still bruised and slightly swollen. I think thats why I feel it quite tender, which of course would make sense. Also when I first came out of hospital I couldnt get my jeans near me, although I was wearing sweat pants as I was told to wear loose fitting clothes. But even trying on my jeans I was soooo swollen. Now I can wear them......so swelling has gone waaaayyy down which is good. But yes I agree that definitely would make sense. Thanks again:hug:

Considering pain pump
 

Is there any one out there that is considering or recently who got the pain pump? I see much talk about the SCS but not much about the pain pump. I am at the very beginning of this and am looking for some answers and stories regarding the pain pump. Thanks so much, pretty nervous after my hip replacement is what brought me to this decision.

Welcome janen!
 

It's good to have you!
There are several here who've had the pain pump.....
"Bobinjeffmo" would be a wonderful resource - he actively posts and you can visit his profile page and maybe send him a visitor message. He talks very openly about his and speaks very highly of it.
Another way to track down posts of discussion on the pain pump is to use the 'search' feature at the top of the page. Type in 'pain pump' and it will bring up posts you can refer to.!

I hope you stick around! This is a wonderful place of support and information.
Also, at the top of the page you'll see a special little section with important info and links. Check out the 'stickie' thing at the top :)

Rae
:hug:

Im feeling good today!
 

:)well its a beautiful sunny Monday lunchtime here in Dublin. A real Autumnal day.
Today Im feeling somewhat better than I did last week. THat nagging pain in my upper back has definitely eased off a lot. Im hoping it stays that way;) I went for my walk this morning and it was just lovely to get out in the sunshine and fresh air, be it a bit chilly!

My stim is doing ok for me while Im sitting and lying down. I dont get a lot of relief while Im walking:rolleyes:but maybe next time Im tweaked I could address and see if I can have it sorted just for walking. But, Im a bit happier that its doing 'some' good. I even did a couple of my winter baskets over the weekend, now that was just awesome!

Hope you are all keeping well too:grouphug:

Battery Pain
 

Hi Jackie,
My battery sits in the right side front. I understand what you are feeling,my first battery never sat right in the pocket. When I would sit, or bend it would pop out. This went on for over a year but what happened with all the movement the site became very sore. After alot of talking, my doctor went back in and put in a bigger battery. Well, the new one does the same and when I have a fill it is very,very painful. I really feel the pain you are feeling is just from surg, and it will get better,but if not, tell your doctor and make sure he or she hears what you are saying. The bumps you feel, when you touch it, may be scar tissue, but once again if they do not go away,tell the doctor. I have found in the 4yrs that I have had my pump, I have to be very in tune to what is going on in my own body. But what a wonderful thing this is! Even though I'm still in pain, I can't even think what it would be like without the pump. Stay strong,you will get used to it, and enjoy each day

Thank you Teddii !
 

And WELCOME! :hug:
So glad you found our little corner of the cyber world!
You have a PUMP! Fantastic! I'm so glad it's doing good for you!
There have been several coming to the forum asking about the pain pumps.

I hope you stick around so we can get to know more about you.
I cherish the wonderful people who take the time to share their experiences with these devices, as it is a complicated concept for the 'rest' of the world to comprehend what we are dealing with.....
The support we gain from one another is fantastic!

It's so good to have you!
Rae
:grouphug:

My battery is also a pain..
 

Firstly I'd like to reiterate the last reply on this post. Thanks to everyone for sharing their experiences, it is so hard to explain to someone who hasn't experienced an SCS or similar implant, what it's like.

After 2 diskectomies and a lumbar fusion I was fitted with a Boston Scientific SCS. It worked really well for around 9-12 months, though I did have to keep increasing the power over time. Despite several bouts of re-programming it quite quickly became ineffective, so I had not only the sacral and sciatic pain, but also the very intense tingling from the SCS. As the frequency of this device is fairly low (around 20-50Hz)the brain can pick up the pulses, so over time some people can 'filter' out the noise, which leaves the pain signal behind. At this point you are effectively back to square one.

I was trialled for a Nevro SCS system, which is a higher frequency (5000 - 15000Hz) the brain cannot detect it, therefore there is no tingling or similar associated parasthesia. The trial was graet, and I was lucky to be fitted with the new implant in June 2012. The old 'pocket' in my right buttock was re-used for the new battery, which is approximately 60% larger and after a few weeks this healed as expected.

The implant itself took a bit of getting used to and a few re-programs later it's brilliant. HOWEVER, since Christmas I've had a reasonable amount of pain from the battery site itself. This has escalated quickly and is now very painful, and on a bad day is excrutiating. So I am now reduced to taking strong painkillers for the battery pain whilst my sacrum and sciatic pains are pretty good :(.

I'm on the list for a battery re-position but have been advised that this could take up to 4-5 months. My GP has prescribed Lidocaine patches which I wear for 12 hours overnight which at least helps me get some sleep. But I just can't wait to get it re-positioned now.

It's good to know that I'm not alone with this, as it's very easy to feel isolated with chronic pain.

Roger
 

The Oh So Very Cool thing about this place is the certainty which dawns on each, regardless whether someone bears the exact same experience, we are NOT alone in the world of chronic pain. Reaching out to one another provides its solace no matter the pain with which each is burdened.

I feel sad your Boston Sci device descended into uselessness and glad your Nevro replacement stepped up to the challenge. Now, if your battery situation will calm.....

For this I will add prayers,:)

heating pad
 

OMG....I am runnng to get my booklets out....
I have been having pain under my battery (top right quadrent of my R buttock) that travels to my hip just under my waist. It gets excrutiating and I cannot step up a stair without hip pain so I now go one at a time.


Yikes....I have been treating it with a heating pad; extra costly massages... the one thing that really helps is a yoga move which made me think pinched nerve even tho it is my battery side.


wondering if there is a pattern developing here...I am one year post op
My battery gave me no trouble other than inflamation. It is however coming closer to my skin.
Praying for pain releif all around
Johanna

Thank you Roger!
 

Thank you for your testimony, Roger. You hit the nail right on the head about how chronic pain is very isolating.
I hope and pray that your situation will improve. You've been through alot.

Caring,
Rae
:grouphug:

My battery hurts, also. The left one burns, but the right one. The one that's been in there for 9 months has been very tender and sore. Really strange. I see my rep Tuesday or some tweaking at six weeks for the new one. I'm going to ask her. This bipolar Texas weather is driving me crazy. It's got my pain levels high even with the stims. Anyway, I miserably failed a vision test yesterday. I have no peripheral vision in either eye. There has been some type of optic nerve damage and neuropathy. No glaucoma or retinal detachment. I see the neurologist the 29th. I'm trying to be positive. But the battery thing, I may take some adil and see if it helps.