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 mindand 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 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 nowjust 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 daughterbut 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

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 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!

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 thatBecause 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 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

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!!!

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??
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

Time for a tweek.

Mental note to self: QUIT PROCRASTINATING!!!!

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

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!!!

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

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'sTara