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 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 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. 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

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 'sTara

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,
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"), 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

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 hipswhich 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 revisionI 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

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

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

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! 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' 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......!


Rae

Rae
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
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

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

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 , 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......