St. Jude spinal cord stimulator, no pain relief

Hi buddy.  Sure you don't have my rep.  The one I got rid of.  Had my 2nd adjustment on Frinwit the new rep.  He kept the one that sort of helped the back at program 12.  Then he added program 13 to try and wrap around the right hip.  It seems like there is a wall that won't let the stim help the right butt and down the leg.

like you new pain.  The battery gives me a sharp twinge when I bend over gently.  Also where the paddle is in the thoracic area pulled/stretch while hanging on a noddlenin the pool.  I am going to talk to surgeon and give till Nov. to get it done so I can have some normalcy of life or take this damn thing out.

Put in another formal compliant to the Ethics and Compliance Divison of Abbott. Awaiting a response.....but nit holding  my breath.

Feel better soon. ??

Hi,

I'm a little confused. So far there are two folks that had a good trial with leads but had paddle implants.Why would they change from what was used in the trial? My surgery wound pain is finally tapering off.Maybe I'll get more than 4 hours of interupted sleep.I get the bandages off Thursday.

Hope it gets better for you. 

 

Hi there.  I would have definitely put the leads in my back as opposed to the paddle.  I was not given the option.  You know what they say about hindsight.

Wish I had the choice and by now I know I would be feeling much better than I do right now.

But you used the leads in the trial, Correct? And the trial with leads gave you some pain relief? I know the paddles are supposed to anchor better since they have some structure thet scar tissue can grow over and around.

Hey,

Did your doctor not do an MRI to check to see if everything was in place? That is what mine did and discovered I had severe bulging discs in my cervical spine!  I was like really??  I'm sure you've had your surgery by now and I hope everything went well and you are feeling better

Yea, I had an MRI and several additional scans at the Mayo clinic about 4 months before the implant. I didn't do anything to bring on any change to my condition, and I had the implant about 1 1/2 weeks after a successful trial

Do we all have the same St Jude Rep?!!! Mine is quite an ass.

Beginning to think all the reps are assess no matter what country, or state you live in.  I,think they over sold their expertise in managing and programming the stimulator.  Just my personal opinion.

My 2nd rep was the best, I loved him, then another chap took over and seemed lovely until I started having severe lower back pain where the leads went in and pain around the implant site in my abdomen. I had also developed a tiny blister type spot on the scar tissue. He told me to contact the Professor who did the op and looks after my pain management.  I did see him and said I wanted the whole lot taken out. He was fabulous, and gave me some temporary pain relief and asked me to come back in 2 weeks. The pain increased in my back especially where the SPOT was. I was due to see the Pfr last Wednesday by which time I was absolutely certain I wanted the SCS removed.  The rep contacted me a few days before the appointment asking me how I had got on at my last appointment with the Pfr. I explained everything and also how bad the pain was and that I had had enough and I thought a Year was long enough.  

Consequently he didn’t reply !! Spoilt brat. 

I saw the Pfr on the Wednesday and he took one look at my back and “The Spot” had more than doubled in size and was apparently a serious infection which may have infected the old wound site. He said thank God it hadn’t burst. I had to have Emergency surgery  to remove it and the surrounding tissue and that the leads which were folded over under the skin and the SCS must all be removed. I went in to hospital first thing last Thursday morning and had it done.  When I woke up in recovery the pain in my lower back was so bad I couldn’t stop crying. They gave me everything but nothing worked so they introduced the big guns.  Ketermine.   I knew what it was but never thought I would need it.  The first one didn’t help so they waited 10 mins and gave me the second one.  That did work thank heavens but it gave me such an out of body experience I hated it.   Anyway the Pfr said he got all the infection and everything else was removed.   I am home now and although in pain at least I know it will pass. 

The strange thing is, the lower left leg nerve pain which I initially had the implant for, is barely noticeable! Whether it’s because I have so much pain in my back and abdomen at present I just don’t notice it. 

All in all, for me personally, it’s been just 12 months of pain.  First the trial, then the permanent implant, then moving the SCS because it was in such an uncomfortable place, and then continual pain for 2 months.  

I have no doubt that it does work because it absolutely DID get rid of the nerve pain in my leg but I just don’t think my body liked having the damned “Alien” “ET” (as I called it) in there. 

I was just unlucky I guess. I did have mine on permanently on the “no feel” thing. Can’t remember what it’s cslled but you guys do. 

Well, it’s a nice sunny Autumn day here in the Blue Mountains of New South Wales, Australia and I am laying on my bed looking out of my window st the trees, and feeling so grateful I am alive because a week ago I didn’t think So would be.   Good luck to you all. 

PS.  All of this , the implant and the surgeries were all covered by an insurance company as it had been caused by an accident at work, so in that respect I realise I have been fortunate as I have read some of you in The US don’t have insurance.  

I have a female one that is really nice, but she's a bit of a ditz and let me go into a surgery without telling me about "surgical mode" so my generator got fried as their was no surgical mode discussed anywhere in my manual, it was just a new thing they downloaded to my generator without telling me or my PM doc.  I had my SCS turned up so high their 5 year battery was only going to las 8 months anyway-- how can they do that, sell a "5 year battery" with settings that will render it dead in 8 months??? So, frying it at the 7 month mark really wasn't that big a deal, it just meant a month of pain for me because my St. Jude DID work great, and now, thanks to nice ditz, I had none.  My other tech, the guy, is an a**hole, but he is damn sharp.  He can program the thing like nobody's business.  He gave me a separate program to use for my ankle surgery that put more juice to the right ankle. A normal program for my low back.  He does know his stuff.

Now, I have to say, I did the trial with leads, and leads is what I got for the permanent.  I think this whole rigamarole with the paddles and doing laminectomies is some kickback scheme so neurosurgeons get their hands in the SCS pot.  If the leads are what work in the trial, why on earth would you go do major surgery instead of just slipping in leads for the permanent?  LOL  I shouldn't say stuff like that, I will find some neurosurgical hit squad on my doorstep....

Lynn

Hi Lynn. Although my pain at present is insurmountable at times, I have no regrets in having this alien foreign object in my body.  It never worked.  I think they were pushing the paddle with not enough statistical data to back up all we patients we were told.

From my surgical perspective, it went according to Hoyle, no hitch,  no infection.  From a pain management point, never gave me, personally, the relief I was lead to believe was forthcoming.  The initial rep st first made me feel like he was doing me a favor by meeting with me to try another re programming.  After two months after permanent implantation, he informs me via text that there was no more he could do for me.

Called the Company, died a complaint.  Is supervisor calls me to tout his experience.  Big Woop.  Second Rep started out great listened to my pain concerns.  Or the next 6 months was hell until I said, “l want this damn thing out.”  My surgeon was awesome and almost 8 mos. LOL it is out.

Have gone thru 2 PM Drs. Who left the practice.  Found a new one, saw him and he told me my first PM Dr. Is now in their practice and would I like to continue with her.  “Hell yes.”  Then asked if he would be offended if I did so. He said no.  I was impressed.  So tomorrow I see the PM Dr. To see how to help in alleviating my pain.

I can barely walk, driving is almost impossible due to right leg pain, standing impossible.  LIfe sucks right now.  I believe in my heart that an answer is out there just gotta find it.  So onward I tredge to find relief.

I am so happy to read all the successes on here.  Thank God for you who are feeling better.

Dee

 

OMG it is so sad reading that. I am glad you found your PM doc, at least having rapport with your doc is an important thing in this world of pain.  Especially now that we have an "opioid crisis" that feels more like a war on pain patients, having a doctor that is totally on your side is oh so important. Research continues, new things do come out every day.  I will tell you Dee that our next step was going to be one of those drug pumps.  Instead of a generator in your butt you'd have the reservoir of drug and the pump with a catheter into your spinal fluid or epidural space ( doctor choice) that delivers a set amount of whatever drugs the doctor chooses.  In my case since I suffer from muscle spasms along with pain it would have been a muscle relaxer along with a narcotic.  The doses are calibrated to be small enough to not effect you mentally, or so they say, I obviously never got to that step.  But perhaps you might want to, Dee.  I wasn't even as bad off as you are and my PM was talking about the drug pump with me as his final game play.  I certainly think you'd be a good candidate. I know they do the trial as a one time injection of the chosen drug or drugs to see if they do the job in relieving your pain while allowing you to be mentally alert enough to live a life and not be comatose.  If that is successful they go ahead and thread in a catheter and you probably still have a pocket for the pump/drug reservoir.  Think about it, I was all in for it if my SCS trials failed.

I don’t understand with so many of us having complaints on the device something has to be wrong!! Who should we contact?? I’m so over it!!’

If you don't have pain in your neck, don't do anything. Many MRI's for many people show bulging discs when there is no pain. There is no concrete association between pain and discs.

I have the St. Jude stimulator. It helps, but the battery only lasted a year and a half and it only helps part of my pain. I'll take partial relief.