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Re: Spinal Stimulator
Posted: Thu Apr 29, 2021 6:14 am
by badnights
Like I said before, it wasn't an easy process of trial and error, but it has been worth it. I hope my experience will help others. I am not the only one trying this option to help RLS. My Rep has told me that there are others with RLS who have a spinal stimulator.
Thank you for this, Deb.
Re: Spinal Stimulator
Posted: Mon May 03, 2021 2:26 pm
by Icantsleep
badnights wrote: ↑Thu Apr 29, 2021 6:14 am
Like I said before, it wasn't an easy process of trial and error, but it has been worth it. I hope my experience will help others. I am not the only one trying this option to help RLS. My Rep has told me that there are others with RLS who have a spinal stimulator.
Thank you for this, Deb.
Yes Deb, thanks for this indeed !
Long term , this may be my best answer (especially if/when my rls progresses further)
I have been referred for a trial , but at this time covid and other things have delayed this indefinitely.
Keep the updates coming please !
Re: Spinal Stimulator
Posted: Mon May 03, 2021 3:02 pm
by debbluebird
Yes Deb, thanks for this indeed !
Long term , this may be my best answer (especially if/when my rls progresses further)
I have been referred for a trial , but at this time covid and other things have delayed this indefinitely.
Keep the updates coming please !
I had two trials. Most people have one. They last a week. The hard part about the trial is no showers. So it's sponge bath time. Also you have the same restrictions as the permanent one. No bending, lifting, twisting, reaching, etc. I had my Sister wash my hair, like you would in a beauty salon in a chair. You can't bend over into a sink to wash your hair. You just don't want those leads to move. Everything on the outside is taped to you and you carry the equipment around your waist.
With the permanent one the restrictions last 2 months. No showers is only a couple of days, as it has to heal. The restrictions are so important because again, you don't want those leads to move. I had help from my family. My Daughter changed the bed linens and cleaned my house.
It took a few days for the battery site area to heal and not be very sore. Ice helped a lot.
The reason the restrictions last so long is that everything needs to heal. It helps the leads stay in place, with scar tissue.
I am glad I am off methadone. Right now I am on Program 3, Level 3 during the day and level 2 at night. A lot of RLS patients are doing that, alternating. Being at a lower level, and then even turning it down more at night. I think for people in severe pain, they use the higher levels.
For me the higher levels caused more RLS. They call that being over stimulated. That was very uncomfortable. I never had RLS that bad before. Turning the level down stopped the RLS. Right after surgery they start you at level 4.
Also as your body gets used to the whole thing you tend to not need as much stimulation.
Good luck.
Re: Spinal Stimulator
Posted: Fri May 28, 2021 7:57 am
by debbluebird
I have to be honest. It has not been going well lately. They told me that after awhile you don't need as much stimulation. That seems to be true. Over stimulation seems to cause continuous RLS for me. I did have some good weeks where I slept every night. I am still optimistic.
Re: Spinal Stimulator
Posted: Sat May 29, 2021 5:06 am
by Icantsleep
debbluebird wrote: ↑Mon May 03, 2021 3:02 pm
Yes Deb, thanks for this indeed !
Long term , this may be my best answer (especially if/when my rls progresses further)
I have been referred for a trial , but at this time covid and other things have delayed this indefinitely.
Keep the updates coming please !
I had two trials. Most people have one. They last a week. The hard part about the trial is no showers. So it's sponge bath time. Also you have the same restrictions as the permanent one. No bending, lifting, twisting, reaching, etc. I had my Sister wash my hair, like you would in a beauty salon in a chair. You can't bend over into a sink to wash your hair. You just don't want those leads to move. Everything on the outside is taped to you and you carry the equipment around your waist.
With the permanent one the restrictions last 2 months. No showers is only a couple of days, as it has to heal. The restrictions are so important because again, you don't want those leads to move. I had help from my family. My Daughter changed the bed linens and cleaned my house.
It took a few days for the battery site area to heal and not be very sore. Ice helped a lot.
The reason the restrictions last so long is that everything needs to heal. It helps the leads stay in place, with scar tissue.
I am glad I am off methadone. Right now I am on Program 3, Level 3 during the day and level 2 at night. A lot of RLS patients are doing that, alternating. Being at a lower level, and then even turning it down more at night. I think for people in severe pain, they use the higher levels.
For me the higher levels caused more RLS. They call that being over stimulated. That was very uncomfortable. I never had RLS that bad before. Turning the level down stopped the RLS. Right after surgery they start you at level 4.
Also as your body gets used to the whole thing you tend to not need as much stimulation.
Good luck.
I'm really not sure how the heck I'd be able to do this with a soon to be 5 year old and a recently turned 3 year old with special needs
It is a battle for my wife and I (and my mother) from the moment my kids wake up until they go to sleep
I need to be able to move without restriction
My wife and aging mother simply cannot take care of yet another person
(mom ironically has severe back pain and needs to take care of my dad as well )
Here's to hoping a new med for augmentation comes out
Nothing helps me like a DA
You didn't happen to try a Kailo or Quell prior to the implant ??
I could obviously tolerate either of those
Re: Spinal Stimulator
Posted: Sun May 30, 2021 12:27 am
by badnights
debbluebird wrote: ↑Fri May 28, 2021 7:57 am
I have to be honest. It has not been going well lately. They told me that after awhile you don't need as much stimulation. That seems to be true. Over stimulation seems to cause continuous RLS for me.
Deb, can you adjust the level yourself or do you have to get them to do it?
Re: Spinal Stimulator
Posted: Wed Jun 02, 2021 9:58 pm
by debbluebird
I am in constant contact with the reps, but if in the middle of the night I need to adjust it, I do. I just let them know in the morning. They need to keep the records. I believe I am at a good setting now. Unless something happens, I will leave it where it is. Last night I slept 4 hours, was up two because I was just awake and slept 4 more. No RLS or spasms.
All is good.
Re: Spinal Stimulator
Posted: Sun Jun 06, 2021 5:51 am
by badnights
Nice
Re: Spinal Stimulator
Posted: Tue Jun 29, 2021 10:36 am
by sleepdancer2
Hi Deb. Hadn't visited the forum for a while and was excited to see this thread. I know how precious any degree of relief and good sleep is. Hope your relief becomes even more sustained. You have certainly paid your dues.
Re: Spinal Stimulator
Posted: Sat Jul 03, 2021 6:08 am
by Icantsleep
How are things Deb ??
You are the only person I know using this for relief
As the mods know , no news is often good news
I have my first appointment with the surgeon in a week (July 9th)
.... likely just to get the finer details of the procedure and be armed with information if stronger opioids are unbearable
Re: Spinal Stimulator
Posted: Mon Jul 05, 2021 4:49 am
by debbluebird
The results are up and down just like my legs. I have good nights and not so good nights. The Stimulator helps with my day time back pain. At first it worked well at night. Then I became over stimulated. I had nonstop RLS which was very different than my usual symptoms.
I am in constant contact with the reps. They have reduced the stimulation by changing the programs. I am sleeping better than I did before the placement. I still need meds, but not as much. I see the rep in person again on Wednesday. She wants to adjust the programs again. I believe it is another tool for RLS.
I used to suffer from spasms which are now gone. I believe that my RLS was so severe, they went from regular RLS to spasms. When I have symptoms now, the are very mild RLS. I am grateful the spasms are gone.
Re: Spinal Stimulator
Posted: Fri Aug 06, 2021 9:10 am
by debbluebird
I am still taking Gabapentin 1800 mg every night. I stopped the muscle relaxants, but I am also taking 2 THC gummies.
The rep has changed my program several times. I believe we are getting close. I've had 3 good nights in a row now.
Re: Spinal Stimulator
Posted: Fri Aug 06, 2021 5:33 pm
by Polar Bear
Great news that you are making progress. There is always hope.
Re: Spinal Stimulator
Posted: Fri Aug 06, 2021 6:08 pm
by Rustsmith
Three good nights in a row, sounds like heaven -
Re: Spinal Stimulator
Posted: Sun Aug 08, 2021 10:19 pm
by ViewsAskew
That is SO awesome!