OT: Report on Spinal cord stimulator I had done

[Pugsy]

So this thread is old and quite long
https://www.cpaptalk.com/viewtopic/t183 ... stimulator
and I had several people send me PMs about posting a detailed follow up because they were thinking about a trial....so decided to start a new OT thread that is more cleaner and more specific.

I am now 5 weeks post op from having the permanent implant of the SCS.
Procedure done as an OP and the post op pain was worse the first 3 or 4 days. Some limitations on weight lifting as well as stretching and bending. They don't want you doing anything that might cause the implanted leads, over a certain area in the spinal cord, to move at all because if it moves it doesn't work as designed.

First 4 weeks at a low level of impulses....saw zero relief. This was why I really hadn't updated the old thread...nothing to say.
I was really depressed but I kept remembering the tech telling me that the results I got with the trial might not be the exact same results I got with the permanent implant right off the bat and to expect it to take 4 to 6 months to get things fine tuned.

So last Wednesday I saw the doctor for the 4 week post op visit and explained the "no miracle thing like I had with the trial" and then I had a meeting with the implant rep. It's funny....the doctor doesn't do anything with the implant once he does the surgery. It's the rep who does all the adjustments.
So I sit down with the rep and he ends up giving me 3 different "programs" to choose from and/or try to see which works better for me in terms of pain relief. He programs my little gadget that controls things and I choose and/or adjust things based on my response. Right now on the first program and the plan is to give it at least a 2 week trial. Then try the Plan B for 2 weeks and then try Plan C for 2 weeks. If the big miracle happens at any time then I have the choice not to try the next plan whatever that might be and if these plans don't give desired results there are other plans available.

So far after a week on Plan A....Marked relief in pain when walking symptoms which was the main reason I had this done.
My back and pelvis is really messed up so we don't expect 100% reduction. The implant works for nerve pain but not so great for muscle type of pain and/or general inflammation type of pain. I have scoliosis in the lumbar spine along with some nasty general osteo and degenerative arthritis pain. Up for grabs as to how much relief I can get for that stuff.
We were hoping for some though...don't expect total relief.

By Friday I was noticing that I was walking much more normally with significant reduction in pain when walking. Not totally normal and pain free but improvement for sure.
What was an unexpected improvement appears to be my sleep quality and feeling much better during the day.
Less wake ups during the night to change position to relieve pain and I don't have the extreme fatigue that I was having during the day and I am not having the need to nap near as much. I am actually feeling quite decent during the day and getting more hours of sleep in total. I am still playing with the dosages for daytime meds as well as nighttime meds but in general.....less need for meds. That's still a work in progress.

I will be doing the Plan B in another week after giving Plan A the full 2 weeks. It's a marked improvement from what things were but I feel there is still room for improvement.
Patience has never been my strong suit but I am trying really hard to do as I am told.

Am I glad I did this....you bet your sweet ass I am even if I don't ever get any more improvement than I have received this past week...but there is a big light at the end of the tunnel.

I have always known that my cpap fixed my sleep apnea problem quite nicely but I never really felt "great" and over the past few years have actually started feeling much worse but I know that is because my back/pelvis was getting worse.

So the moral to this story....cpap can't fix problems unrelated to the airway. Those other causes of crappy sleep have to be fixed by addressing the cause itself and that's not always an easy thing to do even when we know the cause.
Doesn't mean we stop trying though. Dig deep....both of my pain meds actually cause sleep problems for me...damned if I do and damned if I don't. One pain med worse than the other in terms of what it does to sleep so that is a work in progress as well.

I am actually starting to feel quite decent...walking more normally...and actually sleeping a bit longer and more soundly.
Not totally where I would like to be yet...and fully understand this might be as good as it gets but I do have additional options available to at least try.

More later.

[zonker]

[Miss Emerita]

Pugsy, such wonderful news! Walking better and sleeping better -- that must feel like a new lease on life. I hope one of the other two plans is even better, but even if they aren't, isn't it nice to know how good the worst outcome would be?

[Julie]

Wow! Great! I was a bit worried re a few pts seen in our office yrs ago who had the PISCES implant, but I guess there have been improvements since then plus hopefully you caught things in time before they became unfixable. Will wait to see how they go in next wks.

[Deborah K.]

I'm so glad to hear that you are having better pain relief and that you have hope for even better relief fairly soon! Yay!

[kteague]

I'm happy to hear you are seeing some progress. Looking forward to reading even more good reports.

[Pugsy]

Quick note about AHI trend changes I am seeing.
Everyone knows that I continually harp on false positive flagging from overall poor sleep quality and keep telling people to learn how to evaluate the flow rate to establish real asleep events vs arousal/awake events before they go start dial a winging pressures to try to improve on the AHI because more pressure is unlikely to help reduce events that are awake/arousal related. Instead you have to fix the poor sleep quality problem first. The only exception might be if there are numerous obstructive events actually causing the wake up but most of the time it's not OAs/hyponeas causing the arousals.

Since I am sleeping a bit longer (nice plus because I sure need that) and a bit more soundly I have noticed a small drop in my AHI. Like last night I got 7 3/4 hours and AHI was 0.2.
I haven't downloaded the SD card yet but I had a similar thing March 27 and I have included that screen shot. See below.
While I am seeing a few arousal/awake flagged events still yet....the number is down since I feel like my overall sleep quality has improved. Less remembered wake ups and less tossing and turning equals less chance of false positive flagging happening. I don't really care so much about the low AHI itself as much as I care about the cause of the lower AHI which means I am actually sleeping better. More soundly so that means I am getting more restorative sleep and when that happens I feel the good numbers. Sleep quality itself is much more critical to feeling the good numbers...more so than getting the good numbers. I have always had "great numbers" but when you have 30 arousals a night (with or without flagged events) I was going to feel like crap and I have been feeling like crap for months and months now as my back/pelvis issues have worsened. By feeling like crap I would explain it as having a strong need to nap and episodes of extreme bone crushing fatigue and just a general feeling like crap all day long with no energy to do the least little things.

Moral of this story is again the cpap can't fix problems unrelated to the airway. Even when my AHI was in the 1 to 3 range with 75% being false positives I was feeling like crap because my sleep quality was crap. Pain was my problem causing poor sleep quality. I had to fix the pain issue to fix the poor sleep issue.

So any of you guys and gals (especially newbies) who are getting decent numbers but not feeling them....start looking at overall sleep quality as a potential problem needing fixing so you will finally feel those decent numbers.
And it likely won't be easy....first you have to figure out why your sleep quality isn't so great and that isn't easy....then try to fix the problem once you identify it and that sometimes is damn near impossible. I have known for years that pain was my problem but fixing it involved lots of trial and error and finally this surgery.

Getting the good numbers is pretty easy to accomplish with little tweaks of the settings but feeling them is a whole different story.

[Pugsy]

Wow...time flies. My last update here was April 1, 2022..
Didn't think it had been that long.

Was the stimulator a 100% fix??? No, it wasn't but then that would have been an unrealistic expectation anyway.

I continue to see small improvements but also continue to see some things that didn't improve.
When it rains I still hurt like hell all over. But what with the drought right now I gladly will get out there and do all the rain dances I can muster up.

My main objective was the hoped for relief from pain when I walked. We accomplished that goal for the most part.
Now I can't go walking for miles but I can at least walk through WalMart without wanting one of those mobile scooters to get me out to the truck and I can at least walk enough to do my chores at home.
It has enabled me to really beef up my flower garden situation since I felt like planting and taking care of all my flowers.
Last year I really didn't plant much in terms of annuals and relied on what little perennials I had already planted over the years for my color.
So April and May was spent planting a lot of stuff and what with the drought I have had to water some plants twice a day since not only have we had a drought but it's been hotter than hell during this drought. I am having to buy hay for my horses and I have never had to do that here during the summer. My pasture is non existent right now.

The plus is that now I can actually get the walking done that is required to water my gardens and plants and feed my animals. I may do it in stages (mainly from the heat) but I can at least get it done.

My sleep is still fragile and while part of it could be related to pain, the biggest part is related to life's stressors which is mainly my mom right now. Having some significant sleep onset insomnia issues along with sleep maintenance insomnia issues. Sigh...always something. Right now the problem is simply not enough hours of sleep for various reasons but my OSA continues to be well managed.

I know I do have some physical issues with my back and pelvis that the stimulator can't deal with very effectively.
It is what it is but overall there has been significant relief when I sit back and really look at the big picture.

So overall...very glad I had the surgery. Did it relieve all my problems??? No, it did not but I have a really messed up back and pelvis and some of the problems aren't related to nerve problems. The stimulator does a good job with nerve pain but doesn't do such a great job with muscle and general inflammatory process pain.

There has been a significant reduction in pain though and an overall general improvement in my daily activities quality of life thing.
Now if I could just sleep longer I know that I would feel even better but that is another problem and a different problem and for another day to deal with. Occasionally I do have a good day with 7 or 8 hours of decent sleep quality but right now few and far between. So I do know it can happen....it just doesn't happen very often right now.

[ChicagoGranny]

It's good to hear you have made some significant progress. I assume you have been using Plan C??

[Pugsy]

It's good to hear you have made some significant progress. I assume you have been using Plan C??

No...actually plan B seems to be my preferred plan. Plan C only lasted 2 days I think it was.
Plan A is okay as well. I need to get with the rep and get some more "plans".

[Janknitz]

So glad to hear you are getting some relief! That's great news!

[mets123]

Pugsy, I also have a spinal cord stimulator since last April. My problem was my cervical area and not the back. The studies on stimulators have been mostly with cases of back pain and not much with neck pain. I also had cervical fusion which has limited my neck movements. I can say I have had some resolution of neck pain but still suffering from pain especially when I am trying to sleep. It’s not an amazing improvement but still happy I did it. I have the Nevro stimulator, what is the one you had implanted? Do you feel the stimulation? My Nevro stimulator doesn’t have any sensation that I can feel. You need to be patient and go through the programs slowly. After more than a year I still at times try and adjust the different program settings to see if I can get some more pain relief.
Keep us posted on your progress and I am happy you have had some pain relief.

[Pugsy]

I have the Nevro stimulator, what is the one you had implanted? Do you feel the stimulation? My Nevro stimulator doesn’t have any sensation that I can feel.

Medtronics is what I have and I can adjust the stimulation as needed and I keep it just below the level where I start feeling it tingling down my legs.
Right now have 3 different "plans" available on the device and I choose one that seems to do okay.
2 plans work decently but one is totally useless.
So yes I can feel it but only when I am adjusting level of stimulation depending on what I am doing. I always bring it up to where I get the tingling then I back it off.

I find that I have to reduce the level of stimulation depending on position I am in like when I go to bed and lay down.
This was not unexpected either.
I do need to get with the rep and maybe get more plans to try.
And yes...understood from the beginning that this was a slow process and we would likely be experimenting for at least a year. I am okay with that. My main number one goal has been met and that was being able to walk without severe pain.
Any other relief to me is icing on the cake.
I really try to look at the positive aspect and not dwell on the negatives. I knew that it wouldn't fix all my problems because it simply isn't designed for some of the problems I have.

Since walking is a critical activity of daily life to everyone...just that relief alone makes me glad I did it.
I am 70 years old...it can't make my body like it was 35 years ago.

[mets123]

Understand, just be patient and definitely be in contact with your rep.