PM Dr wants me to do Clinical Trial-Nevro HF10 SCS
 

I would want to talk in more depth to someone, a rep, the PM doc, his nurse, or someone to get more detailed information before making my decision.

The jerky motions the previous trial SCS gave you may be eliminated by the one proposed but will it be any better at controlling and reaching the areas of your pain?

As YOU know, I have NO clue about SCS devices, so I hope someone will respond that has better insight than I do.

The closest I came to anything of an even remotely similar nature was a TENS unit, which was ineffective for my pain.

Wishing you the absolute best in whatever you decide. Personally, I would want MORE info but then I always want more info on anything and everything.

Mine is a Nevro
 

Hi Deb, I have the Nevro, I love that I have no clue it's on other than there is a reduction to my pain. On good days, I can get up to 60% reduction. Most days I have on avg a 50% reduction ie where I used to have a score of 8 regularly, day in day out, most days now I rate pain around a 4, 5, sometimes 6. It took a fair bit of tweaking over a period of time but I'm happy with where it's at now. Even better, I went from 100mg patch (fentanyl), 120mg OxyContin, 30mg Endone, 2mg Xanax, 100mg tapentadol a day to just 1 sometimes 2 sublingual temgesic .02mc. My journey is detailed on a separate thread.

The trial is to establish if it's of benefit to you. They won't do the full implant procedure if it is not likely to offer improvement to your quality of life and offer you the chance to reduce your meds.

I sometimes have wondered if it really works, or if it's in my mind. I recently went on a cruise and due to security measures at airports and customs etc, I turned the device off. Ended up being off for 24 hours. I was very, very pleased to finally turn it in the following day and within 4 hours notice a difference. :hug:

Hey PamelaJune :)
 

Hi Deb, no I specifically said I won't be able to tolerate pulsing that could be felt in any form. I was totally surprised, and remain surprised at the fact there is no sign at all of it being on other than you need to recharge the battery and the pain reduction. Once you have the trial hey will give you a thumb drive with all the blurb in it or you can google it. YouTube also have quite a lot of info. There is one that shows the full implant being done, don't watch it if you get quesy, if you do watch it, remember you will be asleep. There is also one that explains how they do the trial.

Hi Pamela June,

How long did it take to get it tweaked to where you were happy with it?

How does one tell from a "trial" one (that is only in for a short time, without the luxury of all the tweaking), if it will be worth doing the permanent one?

It seems to me that a person might be very discouraged with the short trial since it is not in long enough, nor tweaked enough, to see the benefits that the permanent one "might" afford the patient.

This is just curious questions as I am not contemplating one.

How many different areas can be helped? Arms/hands AND legs/feet ??? It seems to me that since the areas are so far apart on the spine, a device such as an SCS might be limited to just adjacent areas. I guess what I am asking is if an SCS can benefit areas controlled by the thoracic region as well as those in the lumbar region.

Pam,
If I recall correctly, you had to have the first SCS implant removed because of issues and had a second surgery to implant a paddle SCS which I believe required a laminectomy. Did the first implant have the buzzing/vibrating type? From what you describe, it would appear the paddle SCS does not have the pulsing.


Gerry

Debi,

I also had an unsuccessful trial a few years ago. It was more the pulsing type. I was very aware when the rep and my PM doctor were attaching wires asking me if I felt this or that. After a while I just wanted it over.

I had vibration/pulsing in the groin area as well as my knee caps.Very uncomfortable. I didn't have any pain relief. I was relieved to have it removed. My PM wanted me to do another trial; but I knew I was not ready mentally or physically to do another trial. A positive attitude is very important.


Gerry

Hi Gerry, I had (& still have) the percutaneous leads only, Nevro don't do paddles but because the PM struggled getting only 1 lead threaded in the beginning they thought they may have to do a brand and model change from Nevro percutaneous leads to doing a laminectomy and inserting a Boston paddle with leads. After I did lots of research I stuck with the percutaneous threading not wanting to have a laminectomy (ever again after my last one in the 1990's). I found a new PM who believed he could get the 2nd thread in (& did). He did encounter problems as did the first PM because my upper spine where the leads are threaded in is crumbling -around T8 they went in. I also had that horrible nurse who screamed at me at midnight and refused to give me the meds written up. I complained after my PM requested I do so, (she was severely disciplined).

I have never had the pulsing/buzzing, I would not be able to tolerate it with my headaches. All the paddle SCS implants currently are low frequency which means they pulse/buzz. Nevro only does the high frequency and there is no buzzing awareness at all. :eek:

Hi Hope, it took 2 years of tweaking / adjusting to where I'm happy with it, there is lots of meetings with your rep who adjusts the settings over and above the controls you have available to you on your remote at home. It is very technical and a lay person at home wouldn't have that skill set with having to go into the computer and adjust settings. The remote at home is a bit like changing TV channels until you find a program you can think you can watch for a while...

My trial for percutaneous leads was for 6 or 7 days, quite a lengthy one as it turned out, longer than most people have. They don't want it to be any longer than that because of the risk of infection, you have open leads hanging out of your spine to think about.

How they tell is by getting base line pain scores before the trial implant, then daily pain scores with the implant and post trial implant removal, more daily pain level scores. It was very evident from the graphs and information they collected over that period of time that an SCS unit offered me hope of pain reduction, it's not pain removal and it's important people trialling understand that. The pain never goes away, it just becomes less, and often noticeably more bearable. Keep in mind I was on 2mg Xanax, I was xanaxed out at night, my husband said during the trial I didn't cry in my sleep. Prior to the trial I cried at night in my sleep- lots.

Depending on where the leads are put in is what areas are covered. Mine is inserted in the thoracic area T8 and My two leads have 16 electrodes each. (Paddle leads have up to 32). Mine cover my lower lumbar back and down my leg. I can get a little upper back cover but if I want more I have to have another unit put in higher up. With the crumbling I don't want to risk it. My PM described my upper spine as being like a violet crumble, I think you call it a chocolate crunchy. (Imagine chocolate coated honeycomb).

There's is another user, I think Rae who had got two units, but I could be wrong, I know there is definitely someone on the SCS forum with two units and was/is living a happy quality of life.