Question I had a a burst St Jude's trial and outside of the surgical site pain I got good relief except holy Gas and Nausea. What is that caused by??? Help. And why am I reading review after review that says the permanent implant does not work as well as the trial with the ?paddle? I was a Nurse RN x 25 yrs and I am lost
Has anyone experienced incontinence caused by the scs?
due for SCS at the end of this month, after 2 years of pain and procedures I thought SCS is the answer, but after reading all the comments, now I'm scared to death. Due for ST JUDE Medical scs....anyone have any experience with this particular devise? Nausea had not been mentioned before. Overall has the scs made your life more bareable?
due for trial at the end of January.........was thrilled when I found out about the St Jude devise...after reading all these posts, I'm wondering if I'm doing the right thing....My pain is manageable with the pain pills which I have been taking for about a year. Don't want to rely on pain pills for the rest of my life and over the counter pain meds just don't work. Sounds like having a caring rep is requirement number 1. So, are you satisfied with the pain control and side effects? Have read so many negative experiences, I'm wondering if I'm making the right decision. Any thoughts on this Carol?
I have a question. Why do you theorize that the trial works but the permanent implant does not? I am asking this because I am seeing a pattern and what I'm reading where people are doing very well with the trials but then failing miserably after the permanent implant. Do you agree with this? And if you do do you have any theories about this I'm trying to understand because I had really great success with the trial and now I'm kind of terrified to have the permanent implant thank you for reading this in any help or responses or input would be greatly appreciated Danielle
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.
Danielle! I am so sorry you are still unwell. We are impaired, bionic women that felt relief from trial stim period. Once permanent, adjustments, reprogramming, persistence and faith, and communication with medica professiona all can contribute to the lower success rate compared to the trial.
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!
Hey Danielle! I certainly appreciate your post of questions and concerns. So my trial implant began at 8am on Friday morning and the “leads” (wires) just hung/ taped to skin on back. The battery was held semi-secure onto my lower back and my ST Jude Burst began working immediately.i only had a 3 day trial. Now I consider myself a 35 yr old bionic babe dealing with a lesser level of pain than prior to stim implant. Because the battery had to settle, my muscles and back had to rejoin, adjustment and adaptability plus rejection and exhausting reprogramming can send out neg and regretful feelings and attitude.
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.
Hi RN!! Wow! Your post op experience sounds much similar to mine: needing several reprogramming visits, receiving very little direction and information about the unit and remote, adopting shameful and unwanted - hypochondriac behavior- bc we call constantly our neurosurgeon and nurses.
Honored and grateful to receive St Jude DR Burst, my excitement grew brighter when my royalty neuro explained the benefits of our stim. “To help with emotional distress from physical pain” was the hook that caught this massive shark of a problem!
So YES- MANY PATIENTS ARE FORGOTTEN.. they are content while we remain impaired. Holding firm in persistence and belief and worthiness, y’all to your neuro. Communicate questions and concerns. Be unforgettable.
❤️
Thank you for the response. I am an RN BSN x25 years I had a very bad Traumatic accident and have been bed bound after over ten surgeries to reconstruct my leg. I have Traumatic spinal scoliosis and stenosis and 2 herniated discs in my lower back. I want to function and live again as I have a 13 yo who basically has been watching mom suffer for three years. Where I live in CT it is very difficult to obtain pain meds bc of all the heroin overdoses which are counted in with the pain med overdoses. Doctors now under prescribe vs over prescribe and pain is no longer the 5th vital sign. Sad part...it effects people like me with debilitating severe pain trying to survive on a small amt of vicoden and a ton of Tylenol . I am praying the stimulator helps.
@danielle50661
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.
@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.
@treasurenurse I thank you for beginning this discussion posted over a year ago. You have brought together so many people and questions and support. How luck I am to have found this post.
Did you have the St Jude DR Burst implant? Are you troubles mostly with the physician's staff and tech or the actual company of the stimulator? Trying to help and I think I have some advice or suggestions that helped me...
If a physician has offered the DR Burst , you are the lucky one.Of course, patients are not all successful with the DR Burst nor the other stimulators. And it isn't a cure. I don't appreciate nor respect your physician promising that the unit will take away all your pain. It is a pain management option - in our case necessity. Opiates, controlled substances and even illicit drugs don't take away all my pain. The stimulator doesn't take away all my pain. Together I am able to be more productive, optimistic, living life accepting the deck of cards handed to me. I do have days (usually they are nights) where my SI joint is all encompassing, evil pain and I start down that path of regret, device removal, desperation, defeat and REGRESSION. Somehow I find from within, or support and communicating with my neurosurgeon like we are on the same level, and even substances legal or not, I make it through. Because I know, that if I can get through the tornado and hell, I will get to the pot of gold and enjoy the beautiful rainbow. Its the hardest thing I have ever done; but it has become the most rewarding, too. Overcoming and conquering Goliath feels empowering and preparation for the next battle.
Stimulator patients must demand attention. Be unforgettable. Call. Write letters. Use social media and messenger to directly contact the top of the totem pole - your neurosurgeon. Use St Jude; and if you have a bad customer rep or anyone ever dismisses your concern bc of money or time, go above their head. If your assigned stimulator rep/tech is unavailable, unhelpful, unsympathetic YOU CAN REQUEST A NEW REP/TECH .. until you find your match.
Sparkle, GO FOR IT.
The TRIAL is hell. Worst part. Ya think with our technology they could figure out another way to "test" it out. The trial and surgery are simply uncomparable. Yes, I think there is a connection with your symptoms to the trial. How is that specific combo of symptoms now after having stim implanted?
We are so often ignored. We are pain patients. Unable to be cured. Prescribed meds that become judgements of us. AND we are they ones that MOST OFTEN don't give up. The pain becomes something that feuls us for freedom and release. You can be reassigned reps/techs. Jump chain of command. Call the number on the back of your St Jude DR Burst ID Card. They are their because they give a damn. Not money, power..
@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..
@eric43647 DO you have the St Jude DR Burst? I see you have had it installed 3 time. Same neurosurgeon? Same device maker - Boston, Medtronic, St Jude DR Burst?
I am very interested in your journey that now seems unfortunate and unlucky.
I'm a electrician, programmer, instrumentation troubleshooting. First they told me very little about it. It's like pulling teeth to get info. The dvd, manual doesn't match your programming unit. If I'm to make a educated quest it's the programming unit. If you notice the programmers don't use them. They are all the time switching things out! The programming units are not consistent of what the buttons do. Twice after shutting down the simulator kept shutting down, As for the so call fracture leads, surges, no coverage. All three add up to bad programmer. You ever notice they use their phones or pad's to download the info to your simulator.
I'm a electrician, programmer, instrumentation troubleshooting. First they told me very little about it. It's like pulling teeth to get info. The dvd, manual doesn't match your programming unit. If I'm to make a educated quest it's the programming unit. If you notice the programmers don't use them. They are all the time switching things out! The programming units are not consistent of what the buttons do. Twice after shutting down the simulator kept shutting down, As for the so call fracture leads, surges, no coverage. All three add up to bad programmer. You ever notice they use their phones or pad's to download the info to your simulator.