Spinal Cord Stimulator Problems

I am being told the same thing....that I am the only one having problems!

I am feeling sick and disoriented and very,very overheated!

Jill, I am struggling with much the same. I am new to this forum.If you can feel free to send me a private message so that we can discuss this more openly.

Yes, I was also told same thing when I said I was nauseated dizzy and leg weakness. Staggering like a drunk. Was told doctor wants to have your stomach looked at by gastro doctor(hernia, ulcer) then after all that doctor said to have heart checked out before coming back. I never had problem until the day of Implant trial? So it took months to get appts. And test run for all this and I got an A. So back to what the hay is wrong with my legs and back!! They never heard of ANY of these symptoms before??

Oh I had shortness of breath every since not lung or heart but because I have dislocated ribs according to therapy people and chiro said 3 sublagtions and twisted to one side causing ribs to dislocate. But it all has been in my head! I am glad before I went through the final battery lead surgery like some of you poor guys did. Things were left out of prior procedure talk by reps??The doctor Never talked to me . I was so dumb!

Yes, that is same thing I thought and like pulling teeth to get answers for any problem or help!

Hi Sheila, You might have said before, but what SCS to you have in? I have the St. Jude with Burst, I believe that they told me that my "generator" or battery would last from 3 to 5 years, depending how much you use the "tonic" setting. I have had the St. Jude for 2 months tomorrow. I think that the battery sits too close to my sciatica and when I bend even slightly it causes me pain.

I wish you well on your search for answers, it seems like we are all here because we are in so much pain.

Dianne 

My st jude rep overprogramed/overstimulated me for months and was abusive to Me! WHAT!?! I am being abused and have to pay for it? I think I have suffered Enough! I feel so sick!

You have said it exactly right, girlfriend! Living nightmare? And How do we know all these incidents are under reported????

Yes! Nobody wants to hear the negatives. Makes me wonder if the Opioid Epidemic is really as bad as the media tells us it is or is it a myth that PM docs are using to create the perfect set for themselves: huge income with little threat of malpractice lawsuits because so little is known about scs devices!,

I know there are success stories. I made the mistake of not asking my doc enough questions before hand.

Could not find info before hand only that it should be considered before taking opoids, so My doctor was leaving town (quickly?) And sent me to pm to get SCS. I asked questions but not from anyone but 'nurse' (really rep. From device company I discovered later). Look up now and info on some internet site says SCS should be last resort after all else had failed! Still messed up and feeling duped!

Also, Bonnie I NEVER had bad side effects from medications that hampered my everyday movement and we'll being. I believe the ABUSE of the meds had caused this to happen plus the SCS forces that be in the background. There is big profit in these implants to be sure. But only lost cause cases should get them put in, when NOTHING ELSE RELIEVES HORRIBLE PAIN!. .. JUST MY OPIONION IN MY CASE. WISH I NEVER WOULVE WENT THAT ROUTE OR MAYBE WENT TO BETTER INFORMED AND KNOWLEDGEABLE DOC? THE PAIN RELIEF WAS SWEET IN ARM AT TRIAL BUT NOT THE EXTRA PAIN AND PROBLEMS I GOT.

I'm sorry that you all have had bad/horrible experiences with your scs implant.  I used to work for One of the companies  (not in Sales or Marketing, but in  Facilities Dept).  The doctors don't get a kick-back from,the SCS companies.  Nor do the technicians.  But, there ARE incompetent doctors and incompetent technicians.  The SCS therapy is not an unknown therapy.  It has been in use for 40 years and has been implanted into hundreds of thousands patients - most are successful.  Otherwise the FDA (who is VERY involved in the medical device field) would shut them down.  They audit the companies every year and cite them for very minor infractions. They've issued recalls where production is shut down while the company fixes the problems. The SCS companies are usually a division of larger companies (that provide other types of medical devices such as pacemakers, pain pumps, defies, etc.)

 

I am one of the (somewhat successful) patients of a St. Jude implant.  I was happy to have the option of trying an SCS implant instead of a 7 hour 4 level pins/rods/fusion involving 2 doctors doing surgery from the front & then the back.  Several days in the hospital, then months and months of recovery.  With only a 75% success rate.  

I chose the SCS.   Maybe someday I'll have to have the surgery.  Hopefully not.  The SCS is not for everyone.  It hasn't taken away my pain - just made it a little more manageable.  

If you're not happy with your doctor or technician, please try another doctor.  And call the company and complain and ask for another technician.  Or have the new doctor advocate for you.  

For me, I tried all kinds of pain medications, but none helped my pain.  Or became ineffective after a couple of months.  So, for me, the SCS was a good choice.  

I hope I haven't offended anyone and I'm so sorry for the pain you have.  It's awful.  I just wanted to try to get people to understand that the SCS is not a scam - or big money maker.  It is one option to help with pain.

I almost hate to ask this, but have any of you asked about a pain pump?

Carol

 

Yes told i had to do scs first.

Okay, I understand.  im glad you've discussed it with the doctor, but for you unfortunately, you had to do SCS first.  I don't know anything about the pain pump.

Not kickbacks, but there is big money to be made. This is not a cheap procedure to have done! Where I am from they are very much pushed. The opoids epidemic bad here.

The pain pump is just as expensive as the SCS, it requires a generator be placed that controls the amount of medication that is released into your epidural space.  It is such a similar set up to the SCS, a catheter in the epidural space tunneled through the skin to a generator placed elsewhere.  I imagine the reason the most PM docs would prefer the SCS over the pain pump is that there is more of a chance of complications from medication side effects with the pump.  The SCS should be a lot less complicated.  Playing with opiate and other medications that close to the brain can result in very sudden and massive loss of consciousness, etc.  So, that's why they leave the use of the pain pump as the last resort and not the SCS.  I know some patients do end up with some serious complications from the SCS.  But, if you take most patients, the SCS comes out as a relatively safer tool as compared to the pain pump.  The pain pump will also require a lot more time and effort on the PM doc as there really isn't a rep involved in that, it's the doc and the patient, with the doc deciding which meds to use and what dose and then assessing how the patient responds.

As for pushing things, I wouldn't say I was pushed into my SCS, it was more of an offer after I returned home from our summer RV trip early because I was in horrible pain.  He gave me it as part of a treatment plan option.  He did give it a positive spin, as in it was working well in other patients.  I could see for myself with the trial.  I don't consider that pushing.

Lynn

Hello. I too had a st Jude implant put in just over a month ago. After a csf leak where they made me wait 6 days in a hospital to get the blood patch to fix it, and that goodness it did cause I was litteraly Going Indian in pain. So went home about a week later, yes using the scs it started to give me muscle spasms all over my back and where the battery is in my hip area started to feel like a hot piece of coal under my skin. I turned it off. Since then stiff neck headaches and back pain including original pain. Dr did blood work, xray, all came back perfect. So basically go home you should be fine. Now still continued nonstop joint pain stiff neck headaches and confusion as well as clumsiness on occasion walking like Im drunk. Dr says i think your body is rejecting it. I'll take it out I'll schedule your operation date GET THIS IN SIX WEEKS FROM NOW. Are you kidding me. Anyone ever hear of a dr waiting this long with such long and adding up symptoms getting worse to just wait?

Sorry forgot to mention. I as many I have seen did awesome with the trial. I was saying when they took it out. Just wondering if you ever did get the implant and if so how did it go?

Hi all.  I just joined the site and I read through all the posts.  Oh my how interesting; I wish I would have found this site sooner!  I had the Nevro device implanted 1 1/2 years ago.  The trial worked great; I had about 60% pain reduction!  Unfortunately the permanent placement has not worked; I even turned the device off for four months and kept a detailed daily diary for 8 months in total.  My Nevro rep said have been hot and cold.  When I told m6 PM that Zite was not happy with support he called them and obviously made it clear he would not tolerate poor support for his patients.  They then had the tech come meet me at my doctor’s office and reprogram the device again.  I have been through most of the new settings and it is still not helping.  I think the trial works better because you do not have a big batttery in you pressing on nerves.  I too would have nausea and shock-like pain and with the help of my rep we figured out it was related to over stimulation (the power level being too high).  I have found that no matter what programming they do (setting up which electrodes will send stimulation) if the power level is above 3 lights I have bad effect s of over stimulation.  The power level tolerance will differ by person; I am small/thin so for me it is lower.  I was seriously pursuing having it removed but I do believe that there are still times when I might get a 10% pain reduction and 10% is better than nothing!  I am on 37.5 Fentanyl Patch and now down from 80mg of Oxy to 40-50 mg of Oxy daily (on top of the Fentanyl).  Are any of you able to work?  My life is drastically changed; I have lost about 98-99% of what I used to be able to do.    Can anyone share how you recovered even part of your life while dealing with the constant, excruciating pain?

Kay

i am so sorry you suffer.  All of us here suffer.  People cannot know what it is like to wake up to pain.  Days pass then weeks months and years with only memory of what life used to be.  I too just found this site and wonder now if these stimulators are just snake oil.

i have a Boston Scientific implanted June 2014.  It was a help until about

six months ago.  The battery is sitting on the left side of my spine now (I too am thin) and the stimulator causes more pain when I turn it on.  Or is it just my back deterioration is just happening faster.  

looking back I wonder if it was a placebo and all along my back continued

to deteriorate until the idea of the device helping no longer works.  I would have mine removed but cannot deal with a surgery.  I cannot find a person saying a revision surgery really helps.  Some have the device removed then regret it.  What do we do Kay?

Be careful about sharing the meds you take.  Best just to say opioids.  

My back is now in a lateral shift, self diagnosed.  When I told the PM doctor about one shoulder being higher than the other he said "our bodies just change when we get older".  He never looked at me. I wonder if the shift was caused by the battery.   

As far as living with this pain, I keep a journal.  Every now an then I hav a good day so on the worst days I look back.  Is three or four days a year enough?  I don't know.

i have a DDS Double back brace which helps.  Look into it.  My insurance paid the most of mine.

also, there are studies showing virtual reality games work as well as opioids  for chronic pain.  I am looking into that.  

Keep hoping for a resolution.

sending you gentle hugs.

You say the trial worked but not the permanent implant...was it because the implant was not the same as the trial. Ex. single leads trial and paddle for permancy? That was my case.I wish you luck in dealing with the pain.

The pain meds you are on would knock an elephant out. How do function ???

I just had my stim removed. Not sorry in the least. 8mos. To the day. Right now dealing with post o.p. issues. Pain from the staples. There are lot. They come out next Thurs. I have no regrets with my decision. Lousy aftercare from Abbott who bought out St. Jude. Either from their Tech in the field or from Corporate.

Now I will work closely with my new PM Dr. for other methods of control. Wishing you all the best in finding optimum pain relief with less medication.

Gentle hugs back to you PaleMoon.  Thank you for your advice!  Be well - sending wishes for better days.

Thank you for your post! I've had a fusion at L5-S1 and C7&c8? (not sure about neck). but still have lots of nerve pain in leg ,hip, shoulder .. Had a knee replacement and now have more pain and swelling than before the surgery ! But they tell me it's stable ? My other knee is gone and painful but it doesn't hurt as bad as the one that was replaced ,so waiting 'til Ii can't walk for that one !

I've seen a new pain management Dr. that has told me about the new Blast  stimulator from St Jude (now Abbott I think). I'm kind of afraid as i don't seem to heal well.And seems I've tried everything. Many back and neck and knee injections. Didn't work.

But encouraged by your post. Because after so many surgeries and treatments  sometimes we wonder if

it's just a scam.

Just to let you know your pst was helpful. If you have any other info I would appreciate It as Im still on the fence. 

 Thanks so much

I too believe too the press about opioids is out of control. People will abuse them no matter if they chose to. There is no money in opioids anymore as compared to other things . Procedures -lots of money.  Biologics tons of money very dangerous ! I got really sick on them, I also have autoimmune problems. Think I'll stick with a few pain pills to help stay active  (still pain but helps) instead of cancer or death !

 

Sorry someone was judging you for the pain meds you take.  Pain patients judging other pain patients is incomprehensible.

we are each born with difference pain tolerance levels and suffer various levels of nerve damage.  PM doctors are now relying more on genetic testing as some are born without the necessary liver enzymes to process opioids.