Leads and Batteries and such
 

Hello all, I do so remember Jackiey, whose battery had to be replaced after less than a month of use due to its faulty construction. One never really knows, and a battery may test properly at insertion only to reveal its lack for accepting a recharge or sufficient charge after use. Ultimately, Jackiey received the replacement battery and all of her charges were met by the manufacturer as the faulty product was within their control and responsibility. Kudos to the manufacturer in that situation for accepting responsibility and getting on with the replacement. I believe Jackiey is now much the better for it, having a fully functional unit. :)

Leads, migrating, non-functioning, or breaking, each of Rrae, Tchr012, PoohAC, and now Sophie have written of leads which came to be of little to no use. In Rrae's situation, one of her leads had migrated from the spine down to her waist. Ultimately, the lead was taken out of circuit and the remaining lead, which functioned both normally and well, was left in as a sole operating lead producing the pain management she receives. Tchr012 had troubles with migrating leads, and I believe she went in for paddles. I have had paddles since last 30 June and have had good effect from them, although I have also learned one can turn up the signal amplitude too high [produces paralysis].

I surely hope each of you do find relief from working with your docs, like Irljenn, who will be going in for a second stim unit to be added to the mix in an effort to better control pain. Fiona has twin units and had expected to experience better upper thoracic pain control than she obtained. I have not seen her post here in a while.

Prayin for the lot of you, for sure, and for Jenna's exams,
Mark56:grouphug:

hi Sinéad ! just wondering how your doing? wondering did you make that appointment re the wires? Hope your doing a bit better and not in touch much agony !
:hug:

hi i,m have a problem with mine. they said they didn't move. but alone one of three leads works. having terrible leg cramps. somedays all want to do is cry. i'm a vietnam vet but this is worse than war. brain messed up pain meds and can't do what use to do. sorry for everybody that has to go threw any kind pain.
ron h :grouphug:

Flipin Pain
 

Hi guys,
I'm doing a bit better but not much, my consultant is out of the country this week but I made it clear to his secretary that I wanted to speak to him either in person or by phone, in person would be better. I'm still waiting to know if the technician spoke to my consultant, but the secretary said she'd find out and she's usually okay about stuff like this, but i'll ring again tomorrow, i'm very persistant. Ive had really, really bad back pain (spasms galore!) since last Thursday and I haven't been able to do some of the stuff that I had gotten used to again, like walking, like functioning normal. I'm back on the Oxy and i hate the oxy but it's a necessary evil! I'm wrecked tired again, my husband has even said that the spring in my step hasn't been there these last few days. I've put up with this f**king pain for so long and I am sooooo p***** off right now, I just want to get some normality back again.
Sorry guys, im not in good form this evening but I guess yee know this, when we are in pain are we ever in good form? Are we ever our usual selves?
Thanks for your help and support I really appreciate it, and it's so good to be able to let off some steam and yee know exactly what I mean.

Thanks guys,

Sinéad

Hi Mark
Thanks for your reply, it amazing the number of people who end up with some sort of problem with their leads and at least I can realise that what ever the problem it can hopefully be fixed and ill be feeling better again in no time. My consultant might just go a head and put in the second stim sooner rather than later, like Jenna, it should make a difference.
I hope each day is getting easier for you and your family, you've been through such a tough time and unfortunately stress never helps pain levels but unfortunately we can't do anything about alot of the stresses in life.
Love and God bless, Slán agus speannacht
Sinéad :)

Sinead i am so sorry you are still in pain! of course you are p***ed off and you have every right to be. Can you contact the rep directly and ask whether she has addressed this problem with consultant? I dont see why you have to wait another week and endure this pain. I can only imagine the agony you are in especially when you have to sit in work all day on top of everything else! sending you a gentle hug!

I got a call today from the pain management clinic in our hospital I have an interview at the end of August!! why do they need to interview us first?

Feeling your pain
 

Sinéad, Ron, Jenna-

I have thought and prayed about your situations today and have to admit I feel stymied by the several of you and others of whom I know whose devices are not functioning as was anticipated or have malfunctioned. Simply speaking, I just don't know what to offer other than that all of you are in my prayers and I truly care, having experienced years of the pains you write about. Oh, how I wish I could bring about some effect which would right all of the wrongs and pains I understand each of you suffer.

Waiting interminable times to finally have THE appointment hoping to find relief such as that August date of Jenna's IS the height of frustration. Suffering the pains that were known before stim IS unbearable, and I did that for years. I feel for all of you!!

CARING:grouphug::grouphug::grouphug:
Mark56

Problem with leads
 

Hi guys,
Thank you all for your support and kind words, another crappy painful day of feeling stuck! Stupid spasms!
Jenna they interview you before a pain management course to see if you're suitable from my last experience with one (it was horrible) they tried to fit me the square post into a round hole, they wanted me to fit in rather than trying to hlep me with my problems, unfortunately chronic pain doesn't work like like this and not everyone is the same. To be honest, I don't know how much i'm going to be able to do in this PM clinic but when they call, ill go and i'll try my best which will ultimately show them that I can do very little! Then again I could surprise myself, an open mind is not always easy

Mark, judging from what you're reading here are you seeing any kind of pattern, is your Boston Scientific implant causing less probems do you think?

Later alligators

S :grouphug:

Boston Scientific Precision Plus SCS Thoughts
 

Hi All, and to respond to Sinéad, from what I have seen on here it seems to me that Medtronic and St Judes have been a lot more brisk about crossing the pond to sell product than Boston Sci. I have yet to see a single Eastern Atlantic post speaking to the fact of patient receipt of the Precision Plus SCS as I have within me. Kinda gives me pause...... maybe I should approach Boston Sci with a marketing proposal for the Eastern Atlantic and Continental countries because, after all, I am one of their unrecognized success stories [interestingly, my thread often beats out Boston Scientific SCS themselves on a search under those terms], I have written to them asking whether they would appreciate having someone like me to work with their fledgling/non-existent patient ambassador program and I am ignored. Go figure.

Bottom line for me is that since my implant 30 June 2010 I have been able to fully withdraw from all pain management medications, have used the Boston Scientific SCS and my trusty cushion together to manage ALL of that pain, from low back down both legs- EVEN SPIKES, never have I had a tweak session, and I strongly believe this is owed to the fact of my direct involvement in programming the computer unit within me. All of my reading has demonstrated companies who program the unit FOR the patient based on their audible responses to tweak related questions, and such a process is patently flawed, FLAWED, because each patient feels the pain within their own skin subjectively and has no real means to effectively communicate the tweak results to the rep operating the computer. I strongly believe THIS is why so many of you write of having to return for tweak sessions, since you are not actively involved in the programming sequence.

Thus I credit my rep [and perhaps he is anomalous among all reps] for having set me down in front of a computer and said, "now Mark, I am going to walk you through using the computer to dial yourself in according to the sensations you feel through the stim paddles." Then I proceded to keystroke just as I am doing now to produce sensations along my spinal cord. Right away, I knew what was bad and what felt good and HOW it felt good without having to communicate it to anyone else. Once I dialed myself in on a program, I said that I liked this configuration, and the rep only made it part of my program profile. I continued until I had four separate programs set up.

Notice all of this use of the pronoun I. The programming was the result of each and every keystroke I felt to be beneficial and I did not have to struggle for effective words to communicate the sensations to my rep. I have not requested nor have I needed a tweak session since the original programming session.

Hence, maybe I should put the full court press to Boston Sci and let them in on the fact they are missing out on a very large marketplace owing to their myopic vision of marketing. I cannot believe they would not even reply to me, but then, this is the age of computer sifting of syntax before any human ever reads a word. I will admit it is fun to beat Boston Sci on Google searches time and again. Yep.

Hope this addressed your question. I do believe there is a fundamental difference here.

Prayin for everyone's pain,
Caring,
Mark56:grouphug:

i have to say i also think a big difference is the paddles v wires all the problems are with these wires !