Problem with leads
 

Hi guys,

This morning I had to visit my SCS technician to have the leads in my in lower back adjusted as i'm having an awful stinging sensation when I increase the stimulation settings. The technician in the end couldn't really do anything as she thinks there might be some tissue pressing on the lead, the funny thing is when I move forward the sting is much worse than when I sit back or i'm at ease. She thinks this is very strange, hence the conclusion that something is pressing on the lead.
Has anyone else had an experience like this?

I'm in bits this evening, two hours sitting in the car has but lower back into a crappy spasm, i can't even hold myslef up! I hope it feels better tomorrow

Sinéad

hi. i know some. I max the power. I have been to tech alot times. Now they say leads have moved. Now new surgery to move leads. Mine shoot vibs into the ribs. Ever step shoots from foot to armpit. i have to take an extra norco and laying ball helps. To let you know your not alone. pain is bad
ron h :grouphug:

Problem with leads
 

Hi Ron,
Thanks for your reply, it's good to know i'm not alone I didn't think I was but I kinda guessed someone on here would know what I mean. Yea it somestimes goes into my ribs but not so much, it doesn't bother anywhere else, it stings on one particular spot and I tend to just leave it down low or off, thankfully my leg is fine which was the worst so I'm grateful for that.

Will they just move your leads? How long have you the stim in? if you don't mind me asking. Mine is in since Christmas. Unfortunately I'm still taking alot of my meds except for the Fentynal patch which i've halved and this helps me stay awake through the day.

You're new to the forum, like myself, it's a great forum to be part of, i'm glad to have some friends here.

Thanks again and good luck with everything.

Sophie :)

hi sophie
sorry to hear about your leads and pain!! sent you an email!

J

Aww Sophie, and HI RON
 

Well, Sophie, it just ain't right! Stinging?????? Like as if you were getting some sort of a wire short circuit? That does not sound right at all. I have tried EVERYTHING with mine and it has NEVER duplicated such a scenario.....
BUT I can share a situation that was presurgical which produced the exact same symptom as you seem to describe.

Pre-surgically, I used a topically applied Neuro Stimulator, as I was told, a Tens unit on STEROIDS. They were correct about the strength of the unit. I could ramp it up until it was WAY above what a Tens unit would do, and it did sort of help with my pre-surgical pain management. I carried it everywhere and had these wires dangling out of my pocket and disappearing into my clothes where the electrodes were located.

THE PROBLEM WAS THIS- WHEN A WIRE WOULD PULL LOOSE FROM THE GUMMY ELECTRODE PAD, I WOULD GET A STINING SHOCK LIKE AS IF I WAS IN GUANTANAMO BAY BEING TORTURED. That is the similarity I have known, NOT with my permanent unit, but with the temporarily applied electrodes, the wires of which would slip loose. Only thing I can suggest is ask the rep whether there is ANY possibility the unit is misbehaving possibly due to an elecrode SNAFU [a military term- ask KZLRogue].

Hoping and praying you get this fixed and soon,
Caring,
Mark56:hug::hug::hug:zz

P.S. Ron- I did not mean to ignore you----- WELCOME among about the best bunch of folks on this planet. We support one another, laugh with one another, cry for one another, pray for one another. You name it, we are there for each other. So, buddy, welcome among us!!

Hi Sinead!

hope the pain is not so bad this evening!!

big gentle hugs!!

Hi Mark,

Thanks for your message, it is strange, I rang the Dr office this morning to find out if the technician spoke to my consultant and I haven't heard anything yet but I'll keep trying I can't afford to ignore it, it's too important.

As for the backache, well im not driving to Dublin anymore! It might be only an hour away but nope, two days later and I'm still paying! I've rang my GP for more Oxy and Valium! So much for not being a prisoner to this crappy back! :)

I wouldn't mind but I've been so good lately and time too long sitting in my car and I'm wrecked, it's not fair.
Enough moaning!

Thank you all for your kind words of support, I'm off for a snooze now!

Sinead xx ;)

you have a good point here. when people see us do things even the doctors they have no idea what we are like for the next few days after!! its not fair the price we pay for the smallest things we do. When i do go out for say dinner with friends or a family occassion I am all smiles etc but none of these people see us deal with spasms or pain spikes that kick in as soon as we get home!! I admire you so much for returning to work when having done this you return home to rest or "snooze" it is so easy just to sit and not push our bodies to try and stop the pain increasing! As i wind down to my last exams i do wonder what will happen to me as i seem to have given in to the pain! As i told you i will be going in to hospital after the exams and maybe I will get enough on top of this pain in order to start living again as since April 4th I can count on 1 hand how many times i have left my house.

I do hope you keep on to dr re your leads maybe just make appointment to see him as I know he would not like you in this pain and would deal with it imediately if he knew.

Hoping that your pain will settle at least a little this weekend !
:grouphug:

Lead Problems
 

These SCS units are only as good as the 2 key people that are taking care of there part. These people are the Dr. doing the implanting of the unit and making sure that everything is right as far as placement, batteries, ect. Then the company rep that does all the tweaking to provided you with the very best settings possible. It takes both to make this work right if one is having a bad day of the surgery than it will fail.

I just read on here 3 days ago were someone had their SCS implanted and 24 hours later the battery quite. The Co. Rep looked at the unit and told the gentleman that he will have to wait to see who's fault it is as to who is going to pay to replace the batteries. This may take several weeks.

Listen The Dr. should have had the unit tested the day before hand making sure everything is ready. The Rep also should have done a 2nd test to make sure. Redoing the surgery is hard on us and should only be do once we don't have zippers to reopen and close us up. Now all that happens is finger pointing and trying to place the blame on the patent saying they moved wrong or something else.

It is too bad but this happens more then it should.

Hi hurting,

It's not on is it? On one hand it's as if some Doctors treat their patients as something other than a human with a personality, with real pain, with loved ones that see the pain they are in and are frustrated they cannot help them. With a pain so bad they might pray for death rather than live another day in a body that has so let them down.

Thankfully not all doctors are like that and at the end of the day, we have to do our homework and trust the doctor that treats us.

S

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 !

Problem with leads
 

Hi guys,

Still in deep trouble with pain, I went to work this morning and I had to come home early, when I was sitting I wanted to stand, when I was standing I wanted to lie when I was lying I wanted to get back to work, as long as I don't move too much it's much easier. I sent my consultant this morning and he rang me back this evening he's great how many consulatants would do this. He was sorry to hear I was in so much pain. He's in London at the moment but he wants to see me himself so Monday or Tuesday.
I'm a bit more at ease this evening having spoken to him he's such an angel.
I've heard about the whole leads versus paddles things and I wonder wouldthe paddles be better, even for my next SCS.

How is everyone else this evening Jenna is trying to study for exams and up to high doh.

Love to all,

Sinéad xxx:hug:

Sinead ! so glad that we at least have an excellent caring consultant he is just like a gentle giant!! and i know he will resolve your problem next week.

to think we did not even know each other a few weeks ago! how quickly we can form our friendships for life on this site even if i wish I did not have to meet you because of the "pain" in our lives!

Here is hoping that next weeks comes quick enough for both of us! and have to say UCD are great i sit my exams in a separate room to everyone else so i can put my feet up walk around and use my "mark" cushion to get me through and I also get an extra half hour to do my exam which i won't need as i really don't know enough to stay that long. tomorrow is business law and i intend to use the word "etc" lots and hopefully that will give the examiner the impression i know a lot more than i do!!

We have a group college forum on fb and i did post today that i would miss my fellow students as they are packed liked sardines into one big room with so little room. i have told them that i have a couch to do mine on with candles lit and nice backround music!! now i doubt they believe me but nice to wind them up a bit.

on a good note the ketamine is giving me some relief tonight but about to put charger on which means sitting straight for next 2 hours which wont be great for me.

lots of group prayers for me and if you can ask the man above to make sure the two topics i know are on the paper i might be ok!

Oh my friends
 

Dear Jenna and Sinéad- That the consultants may meet your needs and be present at the scheduled appointments so the relief of ready aid for your difficulties be forthcoming. May work become more tolerable where now it is hard [ I was known as the lawyer who lay on the floor with pillows and my computer propped up on my thighs..... bad on the carpal tunnels ]. Ultimately I did obtain a reclining chair for my office, but I had to use cushions with it due to the PAIN.

May those remaining studies come into fruition such that you feel confident and prepared, for your mind IS clear and your thoughts are ON POINT regardless of the queries presented.

May both of you know times with reduced and managed pain. Oh, and know this, that I am praying for you in your situations.

CARING!:hug::hug:zzz
Mark56

Hello!
I was wondering, when you say they think your leads have moved... did they verify that through xrays?
I do not have paddle leads but it was verified that my leads have not moved, which I am greatful for. I do have a wonderful rep that will meet me at any appt. and tweak, adjust, or what have you my SCS until we get it right. :D
I am still not receiving the % of pain management I would like via the SCS yet but I am hopeful. Since the surgery approx 3 weeks to move the battery, my back does feel better at that site.
Blessings....

Leads moved? I dunno
 

Hi Ron,
Im meeting my consultant early next to decide what to do, I've been in terrible pain right across my back over a week now and it's really bad, i can't really do anything with it. I wouldn't mind but up to that I had been okay, I knew the back wasn't what the Dr was hoping for in terms of relief but I could manage it. The last time I spoke to my consultant he decided he would probaby put in another stim but as I was coping it wasn't urgent, now I don't know what to think, I guess you're right he'll do some x-rays see have the leads moved and take it from there.

How are you getting on? Any hassles? i hope not.

All the best,

Sinéad

hi all
last time at the Dr. he did x-rays. he said look like they are same place.
June 11,2011 meet with tech to adjust stim. she tried ever thing. i have one lead working and one program that works. Dr. said need to move leads. I'm waiting on workman comp to clear for surgery. paperwork doesn't now pain.
i have rechargeable medtronic. i hope everyone feeling the best you can. mine still vibes in the ribs.
thanks to everyone
Ron h:grouphug: