hoping and praying all went well today!! big hugs to you!

Hi Saffy,

Thinking of you today, I hope all went well and like Mark said the electrician has gotten all the wires in the right place, you'll be rigged up like the rest of us now and buzzing around in no time.

Sinéad xxx

Hello! This is Saffy's daughter Hollie ... The doctor is really pleased with how well the trial is working so far and she'll be getting a permanent implant either on Friday or sometime next week. She's in her own little room with a gorgeous view over Sheffield though she's more preoccupied with the novelty of having an adjustable bed :p I'll keep you all updated until she's allowed to leave hospital (hopefully this weekend!) - I can't wait, we're all missing her and it's not even been one night!

Saffy
 

Hi Hollie,

Thanks for the update, please tell her we've been asking for her, I bet she relies on you a lot, she's been through a tough time but soon enough you'll have your old Mam back again. :)

I loved those adjustable beds too I'd love to have one at home, it would be so cool and her own room, she's spoiled huh! Ah she deserves it.

Take care Hollie,

Sinéad :grouphug:

Hi Hollie

thank you for updating us as sinead said!! glad to hear all is going good so far! please send your mam my best wishes and i hope she is not in too much discomfort!! jealous of her bed sounds like just what i need!!

Hi Saffy

hope you are buzzing away to the feeling of pain relief! I always remember the night of my trial first trial scs I had the most wonderful sleep of my life!

Hoping you are not in too much discomfort from the surgery and can't wait to hear all your news on your new scs!

:hug:

Hello all. Thank you so much for your prayers and good wishes, I'm really grateful.

Back home and in bed now. Feeling very frightened and swept. I must bruise really easily because I'm in an awful state. I guess I totally underestimated the size of the incisions too.

It's done though. Hopefully I will feel up to getting up and letting you know everything I remember. I took photos and some video on hospital for you all.

Only got home a couple of hours ago so am doing my resting bit now.

Xxxxxx

Welcome Home Saffy!!
 

I am GLAD you are home in your own comfy bed even though right now it may not seem all that comfortable. It took a few days for my body to settle down to my own bed again. At least the surroundings are familiar to you.

Bruising, awareness of the incisions and just plain soreness are all to be expected with this surgery. The manner by which the connecting wires are threaded along the spine from the lead or paddle insertion point to the computer unit itself can and will tend to produce bruising as well. In a couple of weeks, the soreness should begin to abate bit by bit until at last you do not notice the surgical soreness at all, but feel the benefit of the stim instead.

Do take care to follow doc's aftercare instructions, especially remembering BLAST [no bending, no lifting, no stretching, and no twisting] as your surgery heals. If you can be cautious in this regard, you will help your body scar the unit properly to its permanent position.

Here are continual prayers for your healing,
Mark56 gentle:hug::hug::hug::hug::hug::hug::hug::hug::hug :z

welcome home saffy! take it nice and slowly:hug:

The thing is, I can't use my stim as the sensation does go down my left leg nut also the bottom part of my right leg and between my legs. The latter is really unpleasant. So much so I have given up even switching it on. I have an appointment at the pain clinic 20th june so it will have to wait till then.

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 ! :D

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;)

Oh No Saffy
 

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 :circlelove::hug::hug:zz gently,
Mark56:hug:

.. 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.

https://lh3.googleusercontent.com/-I...1052011137.jpg

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

https://lh4.googleusercontent.com/-k...2052011144.jpg

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

https://lh4.googleusercontent.com/-k...2052011144.jpg

Healing up nicely .. excuse my pants !!

:eek:

Beautiful City, Ouch for your Bruise
 

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 Gentle:hug::hug::hug::hug::hug:ZZZ

EE Mark .. no that's not the pocket ...

this is it here ..

https://lh5.googleusercontent.com/-d...1052011138.jpg

The one in my buttock is, I guess where they thread the leads from my spine to the battery in my tum.

I'm feeling brighter now .. I was a real misery earlier !

I felt the spike going through from my back to the buttock as it was local anasthetic and there wasn't enough at that particular spot, but they soon put some more in as soon as I mentioned it.

Ouch
 

Ouch, but that looks more like the bruising I had at the pocket site. As for local anesthetic, that seems barbaric for the spike insertion. Glad I was OUT, definitely.

Ouch,
Mark56:hug::eek:

Heyyy .. better news. I have been re programmed and the feeling between the legs is a LOT less. It's still there, but she disconnected one of the "points" and it's a lot better .. so am going to see how I get on with it from now till June 20th, which is when I next see Donna.

Had the stitches in my back and side out today .. got to wait till next Tuesday for the tummy ones, then it should be all systems go for repair.

I moved my car and put it on the drive today .. although was told that 6 weeks and I should be safe to drive. Hey, I was only moving Tootle.

Also told I can shower and wash my hair so long as I am careful and don't reach high above my head nor make sudden jerky movements, so have been catching up with a bit of dusting and polishing this afternoon.

https://lh4.googleusercontent.com/-r...4052011149.jpg

Here you go all .. this is my Daddy !

So good
 

Aww Saffy, that is outstanding!! Better stim for now, stitches gone and bathing allowed. Moving Tootle to the drive.... now THAT however brief had to feel GOOD!:D:D:D:D:D

Do go CAREFULLY with those permitted motions. It is all TOO EASY [ask Rrae] to allow yourself to be caught up in the moment and "take a motion too far" and then the consequences set in! Just a word to the wise, no intent to daunt your spirit!!:)

Quite a picture of your remote! I have never thought of showing a picture of my remote..... but then, I reckon I just fall short on those sort of information points. Pretty cool! Also, it does not look too large!

May your evening be wonderful [as I try to calculate back to Greenwich mean time]!!

Bon Chance,
Mark56:hug:

Hi Saffy,
You're flying and by the sounds of things in great form, I'm so happy for you and you must be thrilled.It's great when you get that reprogramme where you dont have to change your settings everytime you change positions I think it's wonderful. My technician added another setting to my stim two weeks ago, so now I have a 1 and 2 for the back and legs leads and now I have an A&B Setting, A is the normal one I had all the time and the B is for the car, I realised that I needed a completely different setting for the car and this is great, my technician had words with me for having my stim on in the car but to be honest that's when I need it most, driving is an absolutely killer for me.

Oh, I tried bio oil for my scars and it works a treat, the one on my belly used to annoy me a bit (silly really) but it's much better now. They don't take long to get better.

All the best,

Sinéad xxx:grouphug:

Hey peeps! I find that when my stim is turned up you can't walk properly? I am unable to walk many steps without being totally dependent on crutches otherwise I fall over as my muscles in my legs spasm? Is this normal at this stage?

Also. Bah humbug. That feeling in the saddle area is well and truly back.

Turned up Stim
 

Hi Saffy,
I sometimes get some stinging in my lower backwhen I turn up my stim and I'm told this isn't normal so I guess yours might not be either. I'd mention it to your Doctor and see what he/she thinks. It might just need some tweeking and sometimes it can take a few tweeking sessions to get it right. Everyone is different and this is just my experience.

Take care and I hope you get sorted soon, don't let it go on too long

Sinéad :) :hug:

Saffy....
 

...........................................http://dl2.glitter-graphics.net/pub/...xe536faf6u.gif

Just wanted you to know that I've been praying for you from the sidelines....
It sounds as tho your spirits are lifted and I'm so glad for this. You have indeed been thru aLOT :eek: Thank you so much for sharing those photos!

As each day passes, you'll feel more and more like yourself.....and I trust that there is a program just for you. Don't feel discouraged if you don't seem to have it just yet. Perhaps after swelling goes down, you'll get a more accurate reading on your stimulation. It's pretty typical to have to go back in a few times to get tweeked. Scar tissue forms at the incision site where your electrodes are, which may call for fine tuning.
I hope they have given you ample supply of meds to keep comfortable as you are healing.

I feel SO badly that I'm not able to get on here much these days, but it is only temporary. I miss everyone. ...and I hope POOH noticed my hidden signals of the POOH bear, yes Pooh :p I think of you often.

Hugs to all
:grouphug: Rae :grouphug:

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.

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

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

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

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:

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

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:

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.

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