Spinal Cord Stimulator Problems

i am so sorry you hurt.  The only real pain relief I get is from opioids.  Pain, relief from pain should not be lumped in with the tragic misuse and deaths caused by street drugs.  Taking my or your meds away will not change the drug crises.

i am 73 and have suffered with back pain for more than 50 years.  By the time I got to a neurosurgeon in my 60s too much arthritis had set in for the needed surgery to be of any benefit so I got the SCS.

@ginny98878 Hey Ginny.. Have you decided on the implant? Is it the St Jude DR Burst? There are a few kind. If you need fusion, rods, screws the whole package, ACCEPT the St Jude neurostimulator. Yes, people have probs with the leads (wires) and battery aggravation bc it's connected to a remote by BLUETOOTH. In comparison to the "life" and pain and hopelessness prior to the implant, YES it helps therefore it is a success. It doesn't cure anything. Combined with meds it manages BOTH physical pain and emotional pain. That is the advantage with St Jude stimulator... All the comments, non-success stories, and feelings within from so much pain and unfairness will sabotage this gift that the PA approached. Being a nurse (how ironic) use all the good, bad, ugly, and unknown to patients knowledge and experiences being in the medical field and begin to change the world - or worlds of pain sufferers.. 

I am very interested in your journey that now seems unfortunate and unlucky. 

You must think of your neurosurgeon as a human.. a brilliant human- but stillhuman.. this opens communication with he and your stim rep to find your exhales that have been MIA for so long!

Susan I have to be honest I went to the trial of the sea Jude spinal cord stimulator and my pain was so relieved. I want to tell you though where they made the incision along the spinal cord even though they were small they were quite painful where they put the leads in. I want to tell you though I did experience a significant amount of nausea and I also had a day probably a complete 24 hours of a lower left leg cramp which resolved the nausea came and went and I also had some gas issues I'm not sure why but it did resolve towards the end of the trial. The doctor did tell me that another patient who had the same trial that day had the same symptoms. I'm kind of baffled as to why this happens.

@susan58770  With all the neg and discouraging comments along with the fear and uncertainty with having the implant, DO IT. We are the lucky ones to be chosen for the St Jude DR Burst stim. It works 2 ways (physical and emotional) vs Boston and Medtronic only managing 1 - physical pain. Overall, yes it has helped. Going into this surgery with expectations of a cure is the most common damage to it's reputation. It will not take your level 10 continuous pain away. It will bring it down to a lower level or more bearable and functional level. Having a remote to adjust anytime, all the time, gives us comfort. The Burst means that most of the programs on the unit give 1 minute bursts of pulses then takes a 30 sec break and then again send a burst. However, that wasn't enough for me even with loads of meds. So we programmed a continuous mode that sends nonstop pulses in a particular which I also chose. My body feels like I am sitting in a vibrating massage chair all the time...I turn it down a bit at night then crank that baby up in the morning as that is my worst time of day.

Nausea may come from so many reasons. My comes when I am in so much pain or discomfort so I turn up my stimulator HIGH!! You can visibly see my shaking (not in a scary or bad way) as I enjoy those strong pulses to take over that pain I am in. It is usually my SI joints now that my nerve pain in m

y legs has leveled out to be bearable.

Having this implant and experience has shown and shows me that at 35 years old, I can help others with their journey down the neurostimulator yellow brick road. I have days, really bad days, but I have more GREAT and productive day now with the implant. I am realistic with my neuro and patients up for the surgery. I am realistic with myself that this isn't going to cure anything. I will have more back surgeries as we are buying time at this point; 4 surgeries in 20 months. I needed a break. 

ALSO, anytime you need help of any kind, you can call St Jude and give them your Stimulator number that you can find on a card that ya keep in your wallet or on your body. They can tap into ya and they are so kind and simply geniuses! That is comfort to know you are chosen for the "cool stimulator group" bc we have a direct line to St Jude.

THEORY: Stay in open and almost aggravating communication and connection with your neurosurgeon and stimulator rep. Remember that your neuro is a genius but also human. You demand his brilliance and Unfortunate/thankful medical device to work until you feel resurrected. 

Also, that fear and confusion clouding your confidence on moving forward is also 2 very powerful words refraining you from disclosing this to the one cutting your open .. 

the stim DOES NOT take away all of your pain. It lowers the level. Allows you to breathe, sleep, laugh, and maybe ask for less help from others. Adopt an outgoing, positive, thankful and superior attitude through recovery. Physical pain for us is a cliche. That pain begins to engulf our soul and psyche and that is the greatest tragedy of all.

Wow. Danielle, I haven’t any way to possibly imagine your physical pain much less the never ending engulfing mental pain you endure. The irony isn’t lost upon me either. Pro is that you are a medical professional; the con is the exact same.  Yes, I relate with the defeat and aggravation from our government regulations on narcotic Rxs. Mississippi only allows 2 narcotic meds allowed 3x per day. So XR’s and immediate release with a controlled muscle relaxer has been prohibited. (Ex OxyContin + Norco + Valium) That then interfered with any psych meds needed that may be controlled for we can not receive necessary meds like anxiety, adhd or whatever may be. St Jude DR Burst has a selling point (which is also scientifically proven) to help with physical pain and emotional distress from that pain. However, this unit is for management not cure. It has a mode that continuously send pulses throughout the chosen area you need relief from most. You also have ability to switch between several programs depending on you pain locations, intensity and preferences. I keep mine on continuous mode covering L-spine and right leg.... always feel like I am sitting in one of those vibrating massage chairs. Your pain after surgery will extend from your cspine down, so that program can cover all areas. Remember that the unit doesn’t cover surgery pain, but those meds available to be prescribed bc of surgery will help most when paired with the vibrations..  my mother in law had the Boston Stimulator implanted at the same time and had completely different and more promising results. She only had 1 lead in her dorsal column as you and I will have 28! As most things, the body gets used to it so she now must have hers reprogrammed- which is a breeze and takes about 20 mins. I am 35 with an amazing 14 yr old. That disability and evilness effecting our motherhood is disgusting. But for our children to see that we mothers and women are determined and persistent to find freedom teaches perseverance in an unexplainable and really beautiful way. I am sure you have the best neurosurgeon as you worked with so many docs.. that relationship will be your new backbone. Do not allow for any less. 

I have messaged my neuro when I just thought I couldn’t take another moment of pain begging him to just cut off my leg!! I then shared that I will make executive decisions to find pain relief if the government wants to punish us all. He got the messaged and understood! We do what we have to do. It is in our nature to find release however that may be or we will be permanently defeated. You have a story to tell. A success story is being written and I can’t wait to see how yours is going to change so many worlds.