Blessings to each of you for your wonderful words, your straight up truths of your experiences!

Today was a grand 're-progamming' with a different rep. I met him during the scs education meeting, months ago.

Hubby asked a lot of questions. His responses were NOT based on sales. Not once did he lean an answer in that direction. Rather, he was very informative, and it just felt like his heart was in it...if that makes sense. On the way home, I asked Richard (my hubby) what he thought. He said this rep had good eye contact when speaking with us and Richard got the feeling he didn't seem to have anything to 'hide' so to speak. There's just something off about the other one. But they all work as a team so I may or may not have either of them again. It all depends on their schedule and which hospital the other is at.

After tomorrow, I see the PM Dr to go over my results. If its a move forward decision, I will be scheduled a consult with a neurosurgeon then be given a date for the surgery. It will be 2-4 weeks til I see the neurosurgeon and another 2-4 weeks after this appt. when a date will be scheduled. So I have plenty of time to research. Which is something I need to do.

In honesty, I found this forum during a search. This forum name and part of Mark56's post was in that search. I read over half his story in one night and finished the next day. So that is how I found my way here!

Yes, they gave us an Educational class on the SCS. If it weren't for reading here before my trial, I would have been sunk in the mud for sure this past week!

So, I got reprogrammed today, plus one setting added just for my back. I found out the lead floats in this space and is only held in place by one stitch. Of course, its going to move in this space and it actually moves downward. So he reset the leads and I had a full afternoon of being pain free. I was active from 3 til 9 as my grandson is sleeping over. I managed until 8 before my pain increased enough that I knew I had to sit. So I listened to my body, turned up the stem and took my first dose of medication today. I can either stim my back or legs. So doing one the other was throbbing. Meds and stim shut them both down!

I also learned nerves to the leg (from the spine) are way bigger than nerves for the back; therefore, its easier to get stim on the legs. The back nerves take a bit more tweeking due to their smaller size.

Basically, out of 7 days I had 3 good and 4 miserable. My calf pain was gone by lunchtime. It was due to most all the stim being at the lower end of the lead. I don't ever want to go through another day of any of these 4 miserable ones with this stim. This pain is enough then add that on.....well, I was closest I've ever been to the edge.

I get this removed tomorrow at 10a.m., then home for a much needed shower!!!!

Have our grandson tomorrow night. By Wednesday I will be back to learn all I can. Please know, I appreciate your honesty. I'm not afraid of the good, bad and ugly! If there's anymore advice or thoughts, or other places i might learn, please share.

Thank you for allowing me to lean on you this past week and for holding me up. Some may say.....'its just words'......that's OK....to me your words were my everything.

Nanaz,

I think you are very wise to take the route you are on. You sincerely want to know good/bad/plus and minus', not just what you want to hear.

Also, your experience of the bad days was a good eye opener, knowing there might be possibly some days that the stim is not doing as good as it may have done the day before. You seem to be aware there might not be positive only days, but the chance of days with pain. Having meds as a stand-by/break thru is good just in case there may be those days when they may be needed.

I feel you accomplished the expectations test and are doing "great" accepting expectations realistically.

A good rep will not only want a sale; but care enough whether a patient has issues that would NOT make them a good candidate which instead would give them a life of added pain. That is cruel and heartless. I originally thought I had that kind of rep; but was wrong. The same is true with a surgeon being up front with a patient giving them the plus; as well as the minus' and what their chances are for successful surgery.

You have and are still doing your homework. Keep up the good work.

Please keep us informed as to how and what is being done, as well as outcome.

Wishing you all the best.


Gerry

NanaZ,
So pleased today you found a Rep with your interests at heart and have had a good day. I could tell by the tone of your writing how much this day has meant to you - and reading of another member's relief brings us comfort too.
Whatever the future brings for you I hope you keep us informed.

Dave.

I am SO VERY GLAD you found your way here and so many reached out in a big way to help and hug.

You have learned much in the short time of your trial. Yes, the rep can be and seem compassionate as you are going into the process. Yes, the trial is "oh so tenuous" because a single stitch holds the lead sort of in place. Yes, relief can come in bucketsfull while the risk of an opposite result is peeking just around the corner.....

I have a Boston Sci, and have used it faithfully since 2010. It has been, well, truly, a lifesaver. Pain diminished to manageability in that lumbar/leg region treated by the stim. I cried when, during trial, it seemed pain was "washed away." Then I cried again after the trial was removed. It was good it was removed, because I had developed an infection from the insertion point of the leads into my spine.

Gotta tell you, though, even with my rep "forgetting who the heck I am" after cinching the sale and seeing to the install and program [I programmed myself], I am very happy with my stim. Is it perfect? No. But my happiness is secure. I would do this again......in a heartbeat.

REALLY funny thing..... I applied back then to be one of the patient helpers for Boston Sci....and you know what???? The silence was deafening.

So, this report from a user is both positive and not so much. The company, I could do without. My rep is a nowhere person, whom I never heard from again even having placed a call to touch base. The product.....I am truly blessed to have it.

Thus.... would you expect to have a heartwarming relationship with your car salesperson after concluding a purchase? Probably not. If the car performed well and was not a lemon would that be the most important factor? It is to me.

I'll gladly help or answer questions if you wish from a Boston Sci perspective. Oh, and I have written quite a bit on this path....it is noted in the stickies where links to the threads are found easily.

It is a journey, and not an easy one, but the benefits can be well worth the while. After all, I am back to practicing in my profession, and this is something I feared would never happen again. It can be a good life and the blessings can be there for the grasping.

Yup,
M56

Mark,

You have been very fortunate to have had the ability to be able to do the programing yourself. It appears that most depend on the their rep to program/reprogram the stim especially the first few months after the implant. I believe in the past year or so you have had surgery/fusion for the upper portion of your body and have had considerable pain. Do have any thoughts of having an SCS as some have had a second SCS put in for just that purpose?

I am a bit surprised you are describing a car salesperson in the same context as an SCS rep who not only does the sales but in most cases does the programing and reprograming so many count on; especially since most doctors do not do the programing. A car salesperson is just that. Handles the sales; does not and is not expected to do any technical work or reprograming to your car.
To my mind; there is no comparison. In almost all cases, the SCS rep is much needed before, during and after implant of SCS surgery.

Wishing you and yours a wonderful New Year.


Gerry

I understand well the reality and need for a good dialogue with the rep. Yup.

Thing of it is, in my case, I have bought cars before which required programming of special features.... the sales rep was oh so happy to help until I drove away from the lot, yet afterward, that next sale was really compelling to them.

Similarly, my rep was helpful and communicative through the trial.....before leaving the figurative "lot." They were part of the surgery team for the implant. They were very kind in allowing me to program the unit myself. I had politely urged that I actually feel the body from inside out, whereas they only hear verbal responses to posed questions. Once that program session was over, I never had a return of another phone call with a question. To this day, they are a Boston Sci rep...... busy, I might add, working with my surgeon [he confirmed that at my six month review after cervical fusion last January]. Methinks he is a busy guy.

Another stim for my cervical stuff and arms? I dunno. I am kinda tired of surgery, having endured 36 in my time after the wreck 10 years ago. If I do something like that, it will be forced by a pain profile I cannot bear "once again." I pray to God I don't have to go there again.

Hugz to all,
M56

Mark,
It would appear you were "oh so fortunate" to have the ability to do the programing yourself. But you were/are always on top of things. The best at what you do. I rest my case.


Gerry

I didn't have the best experience either when I had my trial but it was more relief than I had, had in a long time so I decided to go with it. Since drugs aren't an option for me. Not that I'm allergic, but it's just personal choice.

Same as you, two days in, I'm feeling awesome. told me that I would have the trial in for 5 days. Well it lasted for about two and a half.

Now like you I felt good so I wanted to go out and go things. So I went to the Zoo. (I would like to say that this is totally a true story and I hope that it cheers you up, at the time it wasn't so funny, but I can laugh at it now.)

I'm walking around the zoo with some friends and we're all having a good time, now this was in the summer time in florida so of course it's a bit hot, and I'm a big dude so I'm sweating a lot. not noticing that my tape is coming off and my lead is falling out. I just walk around the corner to see the manatees and it comes completely out, shocking the hell outta my legs almost making me fall. I immediately turn it off from the little button on the side.

Playing around with the remote I see if I can just change to another program and see if it works out. To get a clear understanding of my surroundings. I'm standing right in front of the manatee tank and there are children everywhere. As soon as I turn on another program it feels like a **stepped up behind and took a taser to my**. Screaming in pain and holding myself I manage to it off. then shouting profanity and punching the glass of the manatee tank making all the children run away in terror and also making the manatees swim away from me.

Now, all of this happened to me and I still went ahead with the surgery. I also got the paddle style instead of the lead. Because the paddle would fit better for me since I'm 6'7", Apparently it was a surprise that I have more torque when I turn my body than that of regular sized people, go figure huh?

I also have a Boston Scientific, Spectra to be more specific and it works great for me. I was even back to work earlier than i had originally planned. about two weeks. give or take a day or two.

WAY COOL, just Way Cool indeed!
Good post and sharing Luthier!
Thanks,
M56

SOmething I don't understand here. The Nevro Implant outputs at 10K Hz. (That's 10,000 vibrations per second) Amplitide does not increase with frequency, which is why the Nevro Implant Operates at this frequency. The only control you have are 3 level of amplitude, and within those levels, 6 minor adjustments of the amplitude (more milli-amps) in incremental steps. Each step can greatly alter you reaction, take it slowly. I have had my implant in for a year. The inside arch of my feet were beginning to atrophy, and itched so bad, I scratched them with implement s till they bled. The Nevro implant has removed that sensation. I can now walk far better and the atrophy/neurapathy, has reversed. I do not allow them to program the "On/Off" duty cycles. My pain is constant, and this type of cycling caused too much pain. My implant is set at the factory standard, I usually run it on the second to the lowest setting. At times, for a day or two, I run it at the highest setting when my legs are "on fire".

It's may be different for different conditions, but I do believe there is a common ground. I wish Nevro would release to it's patients empirical studies so we could find ourselves, compare, and use our minds and stop fumbling, and use this data to our advantage. People in pain seem to be more involved in their care, and are seekers of knowledge. We need this information. IMHO.