Oh saffy this is dreadful news! and even worse still you are expected to wait a full month for them to re programme you! I think this requires a few phone calls or a letter this situation is not acceptable at all!! did the rep go through any of the programmes with you befor you left hospital? could you try another programme and see if that has the same effect?

Big hugs Saffy so sorry you are suffering

They only did me one programme. ???? I saw Donna, the nurse in charge of programming me, the day after the trial was put in and that's it.

Have left a message for Donna to call me tomorrow.

Oh god, why am I so weepy? My surgeon says it's very very early days but is pleased that the stimulation is reaching the area needed .. ie. left leg. But it's also reaching my right leg and in between my legs .. (which if it did the trick .. weh heyyy .. but it doesn't) .. it's uncomfortable.

I came with only the one programme. I probably should have asked more questions but I was actually quite shocked at the size of the operative sites and bruising and I was sat there, wide eyed, saying nothing. It's only now I have questions.

I think it's only just hitting in what a big thing I've been through .. trying to stay positive for Mum after Arthur's death and thinking of this almost like an instant thing, but it's not.

I can't have my stim on so I have the old pain, plus the stitches and bruising.

I tried walking with the stim turned up to ease the sciatic pain in my leg, but ended up walking like Forrest Gump !

Did everyone's stim work right away for their pain and in only the place it was supposed to .. as in my case, my left leg? Or did some of you have it going all over the place?

I am back at the Pain Clinic on 20th June and I hope to hear from my Nurse, Donna, who is being trained to use the tweaking machine, tomorrow. It just seems such a long way away for me not to be turning the machine on? Plus, I am unable to do any of the exercises they showed me in physio because I can't switch the damn stim on.

Frustrated and weepy .. but still smiling .. a bit. x

hi saffy, i had my permanent scs put in 2 weeks ago, and i agree with ya, sometimes it stimulates in some awkward places especially no relations for a while, get it. anywhoo, please hang in there, we are all here for you and i would have had a pretty ruff time of it without the support from these wonderful peeps who know what i'm feelin before i even say it. and on another note, it seems the programming folks should be able to see you asap to tweak what needs to be tweaked. Nan

Your news of the happenings seems the opposite of the intentions of the whole process! When I was programmed, and the rep sat me in front of a computer to have me manipulate the screens and sensations because only the patient can truly feel what is occurring. Working alongside me, the rep had me proceed through programming four programs to my remote control, all according to what felt right to me. I do have a favorite among the four and it runs roughly from my lower lumbar region down both legs, as I need stim in both, although the left leg is my primary sore spot. Then, utilising the remote once within a program, I may manipulate signal strength as you referred to attempting so you could walk.

YOUR situation, on the other hand, seems as though you were programmed by another individual. The only manner in which they can determine what to do for you is through oral communication about what is happening as they manipulate the controls- likely the most imprecise method of programming at all. Then they give you a single program? I do not understand! Alternatives are usually presented so the patient may alternate, because given choices one can ultimately learn that a particular approach is more appealing than another. BUT to be told to wait it out until 20 June to get in for a followup..... it seems inhuman, when the signal is causing discomfort right now so that you are not even using the unit at all.

I hope and pray that you get this matter resolved and soon, for the approach in your case is not supposed to be the end all of the "game." I felt relief instantly from the moment of programming because of the manner and method by which my rep and I approached the situation. I truly appreciated this hands on approach as the patient's approach to and understanding of pain is wholly subjective. No external measurement source exists which is effective. Thus, when I was at the keyboard with the rep watching over my shoulder, I was able to receive the results I needed, and get this, I have never needed a tweak session afterward as has been the case with so many whose experiences I have read on here. NEVER. The programs I set in my remote have been helping me manage pain effectively since 30 June 2010.

Given what I have read among others, I am wondering whether my rep approach is distinct among all companies. To me, it seems the only rational means to an end of patient receiving maximum relief from the process.

Anyway, I am praying for you Saffy that in the meantime you have or are provided SOME means to manage pain until the June appointment.

CARING MUCH zz gently,
Mark56

.. I'll come back when I'm feeling less sorryfor myself

Some more positive news ... back to Sheffield tomorrow to have my stim wires checked and hopefully the sensations changed ! I'll definitely ask her about other programmes whilst I'm there.

My lovely bruise .. and you can just see Felix popping out of my tummy !



The view from my window ... Super isn't it? Beautiful all lit up at night ..



Healing up nicely .. excuse my pants !!

Oh Saffy,

Now I understand about the bruising. I did have bruising in the area of the creation of the pocket for the signalling unit as you have, although mine is right hip, and also up the line of my spine where the wires were run along the spine as the instrument used to run the wires subcutaneously is rather like a spike which is worked from one incision to the other enabling the drawing of the wires through to connect signalling unit to leads or paddles. Less tissue is disturbed via cutting this way, although it seems a bit unnerving to have the procedure explained. This does tend to make general anesthesia a blessing during such a procedure. Yes?

Hoping and praying all will be well with you, and Felix,
Mark56 GentleZZZ