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

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

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,
Mark56zz

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 !

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