My journey after 4 back surgeries and every procedure available…. Now the Spine cord Stimulator- Failed but not because of the technology…
Day 1, Spine Cord Simulator Trial 3/27/25 Thursday
Installed the temporary for trial around 6 am.
The process was not bas I was sedated.
Bas experience though with the rep of Nevro. They never contacted me at any point until after I was out of anesthesia and I had no clue who, what or where she was or why. This should have been a meeting a week prior or a few days to prepare. The doctor’s office seems to implant and throw you away. I called the Doctor office nurse who didn’t care and said try the Nevro rep and actually said “if you don’t like it take it out.” Pretty rude and uncalled for after surgery.
I called for help with the Nevro rep. and no one called back for 2 hours. They need more support or reps to assist patients after surgery. She said we will speak tomorrow at 10 am so I will make a list of questions. The pain is gone from low back but shifted to the middle and it is worse than it was in the low back. It also shows my left thigh pain/numbers is not from the back but from the thigh and I already had thigh surgery, so the thigh numbness is permanent. This did answer a curious question for 7 years was the back pain causing my thigh numbness and that is a no.
Now I have a huge bulge in my back that hurts badly and I cannot drive or lay down so I am standing 24/7. You cannot take medicine either.
So as of Day, 1 this was a failure for me. Keeping hope alive.
Day 2, Spine Cord Simulator Trial 3/28/25, Friday
Pain in low back gone… sadly it shifted to the middle of my back and that is worse than the original low back pain.
Nurse at the office is rude and worthless
Well see today if the company is any help. They didn’t meet before surgery; she waited until I was on anesthesia and after. Pointless.
Experience so far is very bad with this process…..
Hope for day 3 and better results.
I have until Monday to decide. Basically, there is no time for a trial.
Also it shut with me knowing and I realized with it on or off same identical pain
I am for the stimulator still, but you must do better research and use the company you choose. I left it to the doctor because I thought they would know best. Big mistake.
Not looking good. Thanks for listening…. love you all!
We called the Rep and asked these questions
Why is the app shut by itself daily and I receive no notifications at all?
Where would the permanent device be installed
Can I use a heating blanket and ice
Do I turn it off at night?
How long should it run for
How do I try different programs
Is there an external controller to
Do I have to be located near the cell and app for it to work
Day 3, Spine Cord Simulator Trial 3/29/25 Saturday
Today, I woke up still in pain, so the stimulator moved the pain from the lower back to the middle, where the surgery was done. Now, it is even worse, but I hope it will improve. However, on Thursday, they want to implant it in me, and I do not even seem to have much say or enough time to see if this even worked.
The process is rushed, and you are alone despite having a rep. I am dizzy, speaking to the doctor’s office and nurse.
So, I may do the implant and see if it works because this trial is pointless. I have a giant eye-glasses like container on the right side of my back holding the device and tape holding the wires as the so-called trial. But I cannot sit or sleep because it is painful to lie down.
Not to mention how horrible hospital visits are. I left with throat pain and jaw pain because of the things they put in and on you, and my head had blood on it. The thought now of going back again just a week later is torture. The anesthesia also messed me up from stomach to body weakness.
This entire process seems that you shouldn’t bother with a trial and try the stimulator first. There is no trial, and this journey may continue for some time.
It is worth it to have no lower back pain, but will it now cause middle back pain that defeats the purpose of any of this? We shall see.
And I didn’t even discuss the stimulator and settings and phases. Even with a rep, it is baffling and challenging to follow. We trust pharmaceutical companies and put our lives in doctors’ hands but have no guarantee that anyone truly cares. Some days, I wonder if they want to sell the product and make a ton of money rather than care for the patients. That is just in my case and experience, though, so onto day 3, and who knows what lies ahead, but we keep our chins up and keep hope alive…..
Day 4, Spine Cord Simulator Trial 3/30/25 Sunday
Day 4, Spine Cord Simulator Trial 3/30/25 Sunday
Monday, they take everything out… Thursday they implant it through another surgery…
Just the thought of having to go back to the hospital is sickening…
Today, I feel no pain in my lower back, but it is very uncomfortable to have this in the middle back. I cannot bend over and am very limited. They said once the real one is installed, you can do everything and go back to sports, but seeing and feeling this, I don’t think that will happen.
I still do not know why this all came about. No accident, I just woke up at age 42, and that was all she wrote… pain where I couldn’t get out of bed, and it has been there ever since despite every single possible method to lessen the pain.
So here we are, and tomorrow, they will take it all out and schedule me for the implant on Thursday. Do I want this? No. Do I know if this will work? No, it’s still too early. But it seems like no or less pain, may be better than living uncomfortable.
I wanted this pain to leave so someday I could enjoy traveling with my family, and I am not sure that I may ever be pain-free. I once thought I’d be jogging with my sons or playing basketball with my daughter, but it all seems to be ending on that possibility.
So, as always, we go forward and try to keep the last hope alive to move on from pain, doctors, procedures, shots, and hospitals for at least a few months, then two years, and then I hope I never have to think about this all again. But until then, I headed to yet another surgery. Frustrating, to say the least.
Later today, the representative calls as they do daily, and we will squabble and take back and forth about how I do not have enough time during this three-day trial to figure out if this worked. And it is a waste of a conversation. However, I am stuck with whether they care more about the sale of another product or the patient’s actual health as the end goal.
Day 5, Spine Cord Simulator Trial (REMOVAL) 3/31/25 Monday
The Decision… well, they took the trial implant out, and I will not have it implanted permanently.
The technology is excellent, and I recommend it to others, but the doctor, medical rep, and nurse were terrible. I was sick after Thursday’s surgery, so I asked for some advice. 2 calls—weekend, nothing. The doctor told me today that I shouldn’t have had any questions or pain anywhere after the procedure. It seems more that this doctor and staff do not want patients to call for any reason or they cannot handle patient customer service. Having doctors and offices employed is pretty frightening, as I experienced with this one. Do not use this doctor if you are in Boca Raton, FL, and need a spine cord stimulator. (Email me for more) but I am for technology. It was amazing to have no lower back pain for a few days. MY journey continues, but I may live with the pain because going through horrible procedures and surgeries and dealing with rude and unprofessional doctors and staff who aren’t equipped for positive patient care is even worse than the initial pain.
You must have the right doctors, medical team, and someone who cares, but it is a flip of the coin, and you cannot find out until it may be too late, like in my case. If I had the right medical doctor and staff who cared, it would have been a success, and I would have done the implant. But that is not my luck.
There is another stimulator for the back called a Stryker or to have the items implanted from surgeries removed, but that is also a horrible procedure, and there is no telling if it will work. So, for now, I will take a break from all doctors, hospitals, and this all…… except the pain, that will continue on.
To be continued.