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-   -   Saffy: My Journey to SCS (https://www.neurotalk.org/scs-and-pain-pumps/138676-saffy-journey-scs.html)

Saffy 05-31-2011 01:28 AM

Agh Rrae it's good to see you. I can't type loads as I'm mainly on my I pod but my iPad comes sometime this week si I might be able to type more.

Ive decided to ring Donna tomorrow and tell her I'm not going to be using the stim till i see her. Ok it's only a two hour journey but I can't be doing that every week. This last one saw me flat on my back in the rear seat on the way home.

Going to give the leads a chance to scar in before any more tweaking.

Saffy 05-31-2011 03:00 PM

Just a quick one before I watch The Wire .... It's here, my I pad is here .. Yayyyyyy

Mark56 06-01-2011 03:42 AM

Hopin your tweak goes well
 
Awww Saffy, on your back in the car seat on the way home last time, that does not sound to be a good situation at all!!! May your tweak do wonders for you, and though you will not use your stim in the meantime, maybe that new iPad will help keep you distracted........ well...... maybe. You know, one can hope?!? I do.
Prayin for you,
Mark56:hug::hug:ZZ

Saffy 06-02-2011 07:55 AM

Yoo Hoo .. Well I'm healing really nicely and the stitches are out thank goodness. My tummy still looks like it's had half a dozen puppies in there having a fight!

Stim sensations have moved again and can't turn it up enough to get ANY relief because if I do I am incontinent and my whole legs are numb to touch and I keep collapsing from spasms to the legs .. but I do have it on to just enjoy the tickling !! Hehe.

Back at the Docs next week for stronger pain relief I'm afraid. My back pain is a lot worse than before .. and I know I have pain from the op site, but it's not just painful there, but from hip to hip. Plus my cervical spine is playing up and I am unable to move my head much to the side without pain.

Eeee it's a good job we have a sense of humour isn't it?!

Apart from that .. it's lovely and warm here in Derbyshire and I'm sat out on the patio with my I Pad. Been doing some weeding in the garden - using my picker upper thing so I dont have to bend too far.

Hope you guys and gals are coping ok .. x x x

Mark56 06-02-2011 11:25 AM

Thrilled that I am
 
Hi Saffy- I am thrilled you can be out of doors with your iPad and picker upper thing enjoying your garden and all........ although is disconcerting you have such pain and other issues in using your stim. It surely seems it is not programmed properly to affect the pain with which you deal, else you would be able to think of using a wee more stim and give less thought to medicinal therapies. Oh, how I hope your docs can zero in on the plight of the stim sensation for you in order that the device perform for you as it does for me!!

Prayin and hoping you are soon riding around in Tootle,
Mark56:):hug:

Saffy 06-02-2011 11:39 AM

Aww Mark, thank you for your prayers and thoughts. Seriously .. I'm mentally ok, even if the stim doesn't work out in the end. I am thankful I am getting the chance to see if it works ! And it may well do .. early days, early days.

xxx

Mark56 06-02-2011 12:05 PM

Yep
 
Early days these are, yes indeed! One must give it an opportunity to prove its worth. The practice is SO different across the pond.... you come home programmed and ready to use, while on this side, the doctors want one to heal for at least two weeks from surgical pain before programming the unit so as to promote the likelihood cognition of the nerve pain distinguished from surgical pain is so clear the patient can readily determine what is the manner of approach to their particular stim programming.

I believe it is this reason I have never had, received, or needed a tweak session to strive toward a better stim approach..... that is, since the tech had me program myself. Subjective appraisal and response is so much the better in my mind.

ENJOY your rest of the day!
Mark56:D:hug:

Saffy 06-21-2011 05:09 AM

Just catching up. Went back for my four week appraisal yesterday. Donna tried every which way to reduce sensations between my legs but to no joy. She had a word with the consultant and he came in and said he needed to see me to see what may be done. So am there on Thursday. There's a possibility of a second lead or a paddle lead which they say would probably be better.

Ah well .. I'm easy. Will see what they say.

As for the holiday, it was an utter blessing. I went through the scanners with my stim on with no side effects. Was very good and floated about on the sea on a super Lilo for most of the day. Got thrown over by the waves a couple of times on the first day, till we found a more peaceful bit of the sea, but other than that, played safe.

Saffy 06-23-2011 01:47 PM

Ok. After two hours tring programme after programme, lengthening and shortening bits and bobs, it looks like I need further surgery. Went for x ray and Rob, my Doctor is calling in the next few days to suggest whatnot do, but it's likely to be a paddle, but not sure which one at the mo.

pooh_ac 06-24-2011 09:14 PM

Quote:

Originally Posted by Saffy (Post 780952)
Ok. After two hours tring programme after programme, lengthening and shortening bits and bobs, it looks like I need further surgery. Went for x ray and Rob, my Doctor is calling in the next few days to suggest whatnot do, but it's likely to be a paddle, but not sure which one at the mo.

Ohhhh my. Dont know what else to say!:hug:z


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