Another tweaking sessions coming up!!
 

Well its been four weeks since I was last reprogrammed. Im ok with most of it, but sometimes I feel.....oh wish I could just turn it on there! or here, or this side etc. well out of the blue I got a phone call today from the Pain Management Clinic. They are inviting me to another reprogramming session on Thursday YAY!!! initially I was...oh wonder if its a bit too early as Im only a month since it was last reprogrammed, but then I rang the clinic. The secretary told me that my Pain Consultant was on to her and asked her to call me to come in. He is anxious that I have it tweaked as much as I need it. So that changed my mind:rolleyes:and I have decided , hey yes book me in. So Im going there on Thursday at 12pm. This time I get the female rep. She was with me during the trial period. I really gelled with her, now thats not to say that I didnt with the guy who was with me for the permanent implantation, but I just felt something gel with us girls:D So she will be there on Thurs, it will be interesting to see how she 'tweaks' it. She did email me before, after surgery, to say that I can have different programmes for different activities, eg, walking, sitting, lying down, etc....and she also gave me different stimulation feelings when I had the trial, which I dont have now from the male rep with the permanent one. I just have 2 sensations! Im wondering if perhaps she might be able to use just one lead, like isolate one leg, at different stages? anyone know anything bout that one? As Ive two leads do they always have to work in tandem? just a thought. Because sometimes I feel it maybe stronger in my right leg, depending on which way Im sitting/lying down. At times I feel gosh if I could just turn off the right leg for now:confused:just a thought. Maybe some of you guys might know!
So Im really looking forward to Thursday now. Im hoping that maybe she might be able to help my back a bit more. Im just back from some retail therapy with my daughter;)but boy am I wrecked. The pain in my back was unbearable and also I had to turn the stim up, hence worse pain from the stim....thought I would never get home tbh. So thats a bit of a negative for me. Legs......fine though:)......I will fill you all in on how I get on ok!

Jackie :grouphug:

With my Bos. Scientific unit they can program it where you can adjust the amount of stimulation for each leg (or arm) if you want them to. My rep. showed me how to adjust the remote so that I can increase/decrease the amount of stimulation on each leg (and arm). Maybe your rep. can do that for you?

I'm finding that I can't stop my anti-inflammatory meds. yet as I still have quite a bit of inflammation around battery sites and am wondering if it's creeping up into lower back area. Also, a cold pack on the areas can help. They said heating pads/cold packs won't affect my implant at all, so I use them as needed.

Fiona I have a button on my unit that I know changes the frequency/intensity of the sensations. I was told NOT to use this, in the beginning, but of course I had to find out what it did. So I will ask on Thursday if I can actually use it. When I first got my stim, I pressed this button and it increased the sensation, but then once I took it away from my battery the sensation went back to its original setting. So I expect that has to be done by the rep. But I will definitely ask. THanks for the reminder Fiona;)
Im still on my meds, both pain killers and my anti-inflammatories. I went shopping with my daughter this morning, but I had such a pain in my back and you know it was only when I got back that I realised that I HAD FORGOTTEN one of my meds:eek: no wonder I was so bad, but then I realised that the stim isnt working on there at all, hence needing the meds. So this I have to address also:)

I'm really praying for you that your rep. will help you find relief for your lower back as well as the relief you're getting in your legs. Hopefully you won't have to give up some relief in your legs to get better back coverage.

Even though these SCS units are great, they can only do so much...I guess that's why they say 50% improvement and not 100% improvement. Some folks need to stay on some amount of pain meds., even after the SCS is installed, for a while as it can take some time to scar in permanently, and during this "waiting" period nerves can react differently to different settings or even the same settings. Good luck! :hug::hug:

Its amazing how it can help some parts and not others. When people say that it has changed their life and can do things they couldnt, I feel, oh well Im not so sure I can say that:eek:Because yes, its relaxing and covers the burning etc but Im still feeling the same about walking, standing bending etc, My Consultant did say that its great for legs and nerve pain, not so good for backs, which I do find a bit disappointing. As from the outset it was my back that was my problem, until I had some surgery and wallop......my legs went:eek: So this trial and error with the reprogramming is good I suppose, as you say Fiona, once the scarring in has finished then maybe it will be different. But at times Im kinda.........well ok, yes its good, but...........................Still have some pain in my upper back. My Dr did say to me on Monday that its where the leads are and possibly its still swollen and recovering from the surgery. How long I wonder will it be til its ACTUALLY scarred in. I did think 6/8 weeks was it, but obviously not. Im sooo impatient:rolleyes:

Jackie, you and I seem to be running pretty parallel on this!
Get this. Ok, the stim works wonders for the burning leg pain (like yours).....but I've been having one @#$%^ of a time when I go to work or like you, trying to shop with daughter and get around...and then my lower back just starts aching and it continues getting more intense until I'm practically in tears and it becomes PIERCING in the mid-lower back.......!
SOOoooo I thought, hmmmm what if it's the stimulator that actually CAUSES the lower back pain (back pain was NEVER an issue with me) ..... so I turned it OFF for an entire day......yes, the burning leg pain returned, but ZERO back pain!!! :eek:

And today, intense day - relocating office and reeeeally on the move.....My stim going and I'm buzzing right along......then I feel the back pain begin to set in and get more and more intense.....so I turned the unit OFF and I had ZERO pain for the last 5 hours at work! ZEERRO!!

WTH?? :confused:
If I'm at home taking it easy, reclined watching TV or here on my laptop, everything is fine......SCS feels GREAT in the legs and takes 100% of the burning neuropathy away.....but the minute I try to become active the hot poker starts sticking me in the back :eek:

Time for a tweek.

Mental note to self: QUIT PROCRASTINATING!!!! :eek::rolleyes:

Rae my back pain was my first port of call. When I'm up and about I feel as if I have a rather large weight attached to my waist and that heaviness is pulling me down and causing my pain also when I'm stooping too much or standing too long. This is what I need fixing but I'm not sure my stim will oblige no matter how many times we tweak!!! Or turn it up. Yes I'm relaxed with my stim on especially when I'm basically doing nothing. But not so much when I'm out walking. Why do I still have the pain in my front thigh and my knees. And in my back the dragging and heaviness??
I'm sorry don't mean to sound so negative but at times I'm getting so frustrated with the whole thing. I suppose I had GREAT expectations. Buy hey will wait til after tomorrow to see if maybe the new tweaking can relieve some of this PAIN.
I think I'm becoming a real pain myself with all this negativity. I'm really sorry hope I'm not dragging you all down with me. I just needed to let it all out as you all know what the pain is like and I suppose can relate to it.

Thanks for listening :)

Yes! Let it OUT!
 

You are not being 'negative' at ALL! You are frustrated and this is why we need each other!!
Let's see how your appt goes.....I hope they don't make you feel rushed. They better take as much time as it needs because Fiona gave very good input and i just KNOW that there has to be a way they can program it the way you are wanting/needing....! That's why there are all the electrodes and combinations of tricks and treats.....

That back pain you describe sounds EXACTLY like what I feel!
Can't stoop, or I'm a gonner.

Oh how I hope you come away from your appointment with a big grin!!!
:hug:

Yes I hope so too. Well it's just 1am now so I'd better try and get some sleep. Thanks for your kind words. Will let you all know how I get on with my rep tomorrow. Nite to you all :hug:

Good luck tomorrow!!!
 

:hug:Jackie, I am so sorry that you are still having problems and I am praying that your tweaking session tomorrow helps you! I know it took me awhile to get the right tweaking and when I did it actually helped in my lower back and my legs. I had separate settings for when I walk, and when I sleep etc. as well as sometimes one setting for legs and one just for back. When my stim was working I was off all of my pain meds but it did take a few months to get to that point. I think it depends on how good your rep is and how much experience they have because I have had other reps but my usual guy really gets me and he definitely knows what he is doing he even explained the paddles to me before the doctor even mentioned them! Also, do not ever feel bad about coming here and talking about all of your experiences positive and negative because they are helpful! I went to some other sites about stim experiences and they seemed to all be very positive but not very realistic to me and that is why I like this one the best because we have all this support for each other but also we all keep things very Real! I have to catch up on homework but wanting to send you a reply because I understand and know how you feel and that is why I am praying very hard that the rep does a great job tomorrow and you get more pain relief :) Take care BIG:hug:'sTara

Im tweaked :)
 

Well Im back from my tweaking session. Met with the female rep. She is just fantastic. We talked at length about my granddaughter at first:D as she was aware that Cara was born just as I had the implant. It was this lady whom I emailed during my recovery. So we went through the programmes that I have. I did tell her that I wasnt happy with one of the new one and basically I was just using number 2 prog. We talked as to how the male rep (he is lovely too, but I much prefer the female rep as she 'gets' me) has set the last programmes. They felt a bit like thumping and when I had them up high they hurt a lot.
So we started with a brand new programme!!. She set it that I have 3 areas that it covers. So like Fiona said, I have a balance button where I had isolate an area and turn it up or down as I need. This is fantastic. This is exactly what I needed. So she also changed the sensation that it feels somewhat softer than the last ones. Then she did another one , again similiar to the first one, isolating different areas and again letting me use the balance button to higher or lower the sensation. She couldnt understand why the male rep didnt let me use it...but anyway now I can!........She said that I need to come back again before Christmas. She said I need to have some more time and tweak some more, as my leads are obviously not fully scarred in yet. As I said before each time the reps are over the Pain Clinic will automatically invite everyone to the sessions, which is great. I said I will come back when she is there again as I much prefer to have her doing the changes. She is so understanding and also we do get on. Gosh it sounds like the male rep wasnt nice, dont get me wrong, he was lovely but I just feel so much at ease with the female rep. She was with me at the trial and I think since then she has made me feel so good.
So Ive now got 8 programmes:eek: some are redundant though, but Im looking forward now to 'playing' around with them to see if I get any more relief. I have noticed though that when she turned the stim up high at one point, that PAIN that I have in my upper back got worse:eek:. She said that its possible there is still swelling around the leads incision. But I think I might be feeling something like what Rae mentioned when she turns on her stim....but I will have to investigate it further;)
So fingers crossed Im heading in the right direction. Im going to take my dogs for a walk in a while and see if I notice any changes etc.

Thanks again for all the support really appreciate everyones input:hug:

Thats great news!
 

:)Jackie, I am so glad your session went well and that you have a great rep that listens to you and is helpful! It does sound like she treated you a lot better so I would definitely stick with her in the future. I am also glad she gave you more programs and options to work with! I hope that all of these new tweaks get you to feeling even better and have more pain coverage! Take care BIG :hug:'sTara

Glad your session produced good results!
 

Dear Jackie-

So glad to learn your tweak session went so very well and that you now have a full list of programmes from which to choose. May you truly find the peace you need through the application of these approaches to the use of your stim!

Hugs,:hug:
Mark56

Jackie: my rep. told me to give the lumbar implant at least 6 months to TOTALLY scar in well and then they can really go to town on tweaking things. He said that the cervical will take longer, about 9 months as we move our heads/necks a lot.

I got the feeling from him that until those two time periods are reached, that they help you limp along, tweaking it as necessary to help with pain etc. He also did caution me that I may be overdoing things (bending, lifting etc.) too early and that they did tell me that I could do none of that for 3 months post surgery.

So, between the waiting time and possibly doing things you shouldn't be doing (didn't realize I dropped things so often until I was told "no bending":eek:), maybe things will gradually get better. Again, the inflammation may still be a factor. When I first started reading about SCS's, the advice I was given (on another forum, I think) was to give yourself a good year between surgery and seeing what results you'll REALLY end up with. Again, patience, patience, patience:hug:

Ah thats makes sense!!
 

You know Fiona that all makes complete sense to me now.

This tweaking really is only there to get us used to the sensations. Well after Thursdays tweaking sessions I thought, great Im sorted. Well that didnt last too long let me tell you. Ive two new programmes and yes they are 'sort of' working to a degree. But the problem I have is now I have some sensations in my stomach and hips:eek:which werent there before! I can turn the balance up and down. When I turned it on, on Thursday when I went home, boy did I get a shock. Even though I used the balancing button, high up in my back I got a jolt and it was so unpleasant. So made sure I wont be doing that again;). Im not too sure that these two new programmes are worth the hassle though. I dont like the sensation in my stomach or hips. Its a bit like having a 'stitch' in your stomach. Constantly!!! So if what Fiona was saying is correct and I dont doubt it.....by this time next year I should be all sorted with these tweaking sessions. No wonder they give us an invite each time the rep is at the hospital. Its all making sense now. I still get odd sensations in other places if I move differently too so when all 'stuck fast' after scarring in, Please God, it will do the work its meant to do.
If EVER I have to have a revision:eek:I will definitely ask about paddles. Im so delighted to read Marks story, who is only about 6 weeks ahead of me and is already looking at employment..........Bravo Mark:)

Jackie:grouphug:

Glad to hear you're working on your "tweaks":D

I go back in tomorrow for another tweak. Is unplanned as I only saw the rep. last week but my cervical area is giving me problems. I re-read my remote manual and it talked about people having different programs for different times of day, different positions their body is in (ie, walking, standing, sitting) etc.

It got me wondering if I need to work with my remotes more throughout the day, rather than thinking one program will do it, 24/7. I'm beginning to notice that when I lay down at night I need to turn both my remotes up a bit. And when I get up, I'm finding that I need to turn them back down or I start feeling nausea really bad. For me, nausea is an indicator that something's not right somewhere and to date I've assumed it meant I need more stimulation but am wondering now if it's meaning I need to turn the stimulation down...seems the latter is turning out to be the answer.

I bought a Kindle so I could try to read again (haven't been able to read or do my needlework in years due to neck/shoulder pain) and while it's a lot lighter than a regular book, the position of looking down and holding it in my hand is aggravating my shoulder and neck. Bummer. Was hoping the Kindle would be the answer...at least I can plug in earbuds and listen to the book, although I prefer to read. But I digress.

I'm wondering if, depending upon what we're doing, we need to adjust the remote at various times through the day, even if we're on THE program that we think is the best so far. I'm also wondering if, as the scarring develops more (and as Jackie said, there could still be some residual inflammation), if that affects how much stimulation we actually need.

Has anyone, who is beyond Jackie and my recovery time, noticed any of this? Do you stay on the say program but vary its intensity depending upon what you are doing? Did you notice that as your scarring developed you needed to turn the stimulation up on your program (or possibly even down)?

This learning curve is confusing and frustrating at times:confused::eek:

I missed my peeps!!
 

I haven't been able to be on here for the past 4 days and I'm 'catching up' on the posting!
My lumbar is exactly at the 6 month mark! Now that I've made it thru these VERY busy few weeks, I can put total concentration into my 6 month 'anniversary' and am looking forward to hooking up with rep and Dr for an official follow up report on what my status is!

I've only been using one program the whole time, as it covers my legs (which is the priority goal) and also it covers the lower back....and recently I was beginning to suspect that the unit was actually causing my lower back issues, but now I'm not so sure! :confused: I simply started taking anti-inflam meds (Ibuprophen 800mg) WITH FOOD and have noticed a dramatic decrease in the lower back (hot poker) pain.....
I think I was putting too much expectation on my Lortab breakthru med, of which I have grown quite a tolerance to, so by taking the Ibuprophen I am seeing benefit.
I have no idea why I haven't been taking it all along........somewhere along the line, it became imbedded in my mind that anti-inflams didn't do me any good. I don't know what to say......things seem to be constantly changing, so I just need to simply get a good follow up exam and they will tell me like it is.
It's rather obvious at this point that I must have been dealing with inflammation issues with the lower back and that's why I would get the horrible flares.....and this past week has been the most physically demanding since my surgery and ever since I got the 'brilliant' :rolleyes: idea to take simple over-the-counter ibuprophen, it has really helped as a boost to my regular BT meds. Duh.

Anyway, it's good to be back.......I've got a lot of reading to do to see how everyone is getting along.
I'm anxious to hear how Pooh is doing, as we both have been faced with similar challenges (relocating offices)....thank God mine was only moving down 2 levels within the same building.......Pooh's, however, was much more involved.......

Jackie, I'm so glad that you are getting such good attention from your Rep!
Eventually, you WILL get tweaked to a 'T'........
Like Fiona said, as we are healing, the scar tissue and inflammation is ever-changing, which probably is a direct link to why we can't seem to land on the 'exact' sweet spot, so to speak. yes?

No matter how frustrating this gets at times, I continue to feel so much appreciation for the simple fact that we all have each other as we wade thru this learning curve......!

:grouphug:
Rae

Good to have you back ;)
 

Rae:hug:
So good to have you back. Yes I can see how you would become used to the meds, I think I have with my painkillers, like eating Smarties:D
Anyway Im glad you are getting relief from your back now that you are taking the antiflammatories. :) I also am inclined to use the one programme when I think its doing the most work. At times Im chopping and changing but overall Ive one 'favourite' !
Do you still get different sensations when you move about Rae, after 6 months after your implant. I still notice that if I arch my back somewhat the sensation is VERY strong and vice versa. Im looking forward to the scarring in;)

I too am appreciative of this fantastic site. Its great to have so much in common with others. I certainly dont feel alone anymore. Im one of many!
Thanks to you all:hug:

Good Luck Fiona
 

Good luck today Fiona with your unplanned tweaking session :)

Hope you get it sorted out and that the nausea will subside. Ive the opposite to you in regards to sleeping, I have to turn it down somewhat as the pressure on my spine at night sends the stim into overdrive. And then in the morning its back up to full tilt.

We WILL get there eventually :hug:

Oh yes yes yes....
 

I remember at the time of my surgery I asked if he was going to leave some 'slack' in the leads, so they won't pull too tight on bending and such and he indicated that yes, he accounts for that.
Like you, I turn mine down for sleeping and then during the day, I usually have it set to where I don't even actually feel the stimulation.....but yet it does cover that horrid burning pain....
I recall recently (Fiona I think) saying that her doctor said that we shouldn't concentrate so much on how much stimulation we are feeling....but instead, concentrate on the amount of pain relief we are getting.....
I thought that was brilliant input and even stuffed it in my left pocket :) so as not to forget....
It's easy to be more consumed and intrigued with the stimulation sensations...but in essence I have found that if I just have the unit on enuf to cover over the pain, alot of the time I don't even realize the stimulation is happening.....
BUT....there are the times when I'm in major FLARE mode :eek:, so I crank it up and the intense stim comes as a welcome relief......

Sometimes, the stim gets downright irritating, so I turn it off for awhile.
(that creepy crawly feeling - but I think in my case part of that has to do with the BT meds wearing off and it could be a withdrawal issue)
Nonetheless, for the most part, the unit is becoming 'second nature' to me and I am very appreciative for what it does.

I'm actually farther along than 6 months! I got mine implanted on Feb 24th, so my math was off a bit.

Fiona, I sure hope that your nausea lets up!
You give such good input every time you get tweaked......I absorb it like a sponge......
:hug:

My nausea problem
 

I think I've tracked it back to either having my cervical stimulator up too high or bad posture and having put a strain on my neck muscles. It seems that as I'm healing I'm having to turn the cervical stimulation down during the day....less inflammation? leads scarring in a bit? Probably a bit of both. I guess I'm the odd duck here as I have to turn both my remotes up when I go to bed or I don't get enough pain relief to sleep. I've definitely noticed I'm sleeping better these days and I'm a nicer person to be around :D

Fiona Im sure you were/are a nice person with or without the stim;)

Its interesting what Rae said, via Fiona, in relation to not getting too bogged down on the sensation of the stim etc. I must say at times I dont even notice I have the stim on.....and in that way Ive come to realise that I dont notice the pain either at times. Its only really when I turn it off, when I charge it, or like Rae if its getting on my nerves:eek: that I realise, gosh it does help with the burning I have in my leg etc. how odd!!! I just wish I could get it to help me walking. I do walk btw its just I have it so high its impossible to feel comfortable.......but...........I WILL be patient:D

I actually like the stimulation feeling in my legs and lower back as I know then that my hip pain is being greatly reduced. If I turn it down to where I don't feel stim. then I really feel it in my hip and legs. Conversely, I have to not feel it in the cervical area or that's when I run into trouble with nausea. Funny how we all need it differently...and a few weeks from now, as our bodies continue to adjust to being bionic butts (haven't heard that phrase in a while, Rae :D), we may even do more adjustments. My remotes are becoming like another appendage :winky: always with me.

Oh DEAR!
 

YOU ARE RIGHT!!! :eek:
We must NOT lose our HUMOR!!!
http://dl10.glitter-graphics.net/pub...oekaqd90oo.gif<<--BIONIC BUTTS FOREVER!!........

Well this Bionic Butt is buzzing away today. But I must say the area around the battery for some reason feels very tender today:eek:Now havent felt that for a few days. I know Ive upped my activities though So I think I need to 'slow down' ahem:icon_redface: But thats easier said than done. Im now almost 10 weeks post surgery. And do feel well in myself. I get the odd twinge from my upper back. Ive also noticed that since I was tweaked that I cant actually turn on one of the new programmes because it seems to affect that upper part of my back. (if I recall Rae said she thought she had some issue with that too).....so Ive decided not to use it again. Nearly knocked me sideways when I turned it on.


TOTALLY OFF TOPIC....but isnt it just fantastic to see all those brave miners being rescued today. It just makes me feel so lucky to be alive. Its so emotional. I hope the remainder will come up safely too.......:)

I have now decided to ditch the two new programmes that I was given at my last tweaking session as they dont help me at all, if not make me feel worse.:eek: Even though I have a balance button where I can reduce or increase the stimulation and strength its just not working for me the way I want it to. Im getting awful pulses in my stomach and it feels like its attached to something down in my ankle with one pulling against the other:eek:sooooo uncomfortable.
So Im sticking to the one programme which 'helps' me the most and will wait to hear when my REP will be over again and hopefully sort this problem out. I was so hopeful this time ...........so will just wait and see:rolleyes:

Me too Jackie.....
 

I'm way overdo for a tweak, but I have been using the only program that seems to work, yet I know there is an improvement to be had!
It's just a matter of me hooking up with the office, which is usually a ZOO, and for one reason or another, I've had to put it off......

Use whatever works for now.....and there IS a better program waiting for you.
You'll land on it. Sometimes we gotta weed thru the 'not-so-good' ones to find out which ones ARE better. I also believe (but not confirmed) that as our scar tissue is forming, it is affecting our coverage.....thus the need for revisions in the program settings.
:grouphug:

Rae: I agree about the scar tissue and it affecting our coverage. I've noticed just in the last day or two that I'm now having to turn down my stimulators to get the desired affect as how I've had it set is now just too high...assuming inflammation is going down and scarring is progressing as planned.

Im hoping it all happens rather sooner than later. I wish it was 'sorted' and I could get on with having it reprogrammed properly and doing the full job its supposed to:rolleyes: