Spinal Cord & DRG Stimulator Trial

[Oozz]

I have it set for my RLS. I noticed that there is a line. If I have it set too high, then my RLS starts up. With the help of my Rep, we fined tuned the amount of stimulation. In addition, I take meds too. That being said, if I didn't have RLS, then I would focus more on my back pain.

I was referring to the nerve/electrode placement. I figured that it would need to be in a certain location to optimize for RLS vs other regional pain.

[debbluebird]

I don't know. They knew I we getting it for my RLS.

[Oozz]

Got it. So, it was put in primarily for the RLS. I am looking to get this done right now and am meeting with doctors. I do feel like some of the doctors just want my $$.

Could you tell me what the process was? Did they try a nerve blocker first before doing anything invasive? Do you know where in the spine it was placed and did they have prior experience doing this for RLS? What kind of doctor performed the surgery? Did insurance cover it?

Thank you!

[debbluebird]

First, I did a trial. The leads were placed externally. It was for a week. A battery was attached. I wore it with a belt they provided. The trial was to see if it would help with my RLS. It did, so I agreed with the surgery.
The Doctor who did it, this was one of his specialties. He had done many of these. I was under general anesthetic. It was day surgery.
The first week after it was placed surgically was difficult. You have to be very careful. Then I had precautions for 2 months. No lifting, no raising of your arms, no twisting, no bending down.
All of the precautions were because the leads have to "set". In other words, heal around the leads so that they won't move. I had a reached and help from family. I was very careful. After going through all of that I didn't want the leads to move.
The battery is surgically placed under the skin. It's under my belt area, near my hip. More on my butt. You don't want the battery to be placed on the side that you favor for sleeping.
I have to charge the battery. Depending on the settings, I charge every other day. When it was set higher, I charged daily.
It's trial and error to get to the settings that works best. There are reps who work with you. At first I was in contact with them almost daily.
If we changed the settings, they would have me wait 3 or 4 days to see how I felt.
I also found that if the settings were too intense, then that made my RLS worse.
I found the people who I have worked with to be very good.
The trial should tell you whether it helps your RLS.
My RLS is related to my back pain, osteoarthritis and pinched nerves.
I also still take meds. Gabapentin and buprenorphine.
I guess, if I didn't have the stimulator, I would be taking more meds. I have severe RLS.

[Oozz]

Thank you so much for responding. That helps me a lot in understanding what to expect. I was not aware that your RLS was caused by pinched nerves/back issues. Your RLS has been somewhat harder to treat, correct? Do you think that is because the pathology is different - not neurological.

Mine is definitely neurological and hereditary, but I have a lot of hope for the spinal stimulator and counter stimulation as a therapy. Any physical touch relieve relieves my urge to move, even if it is not where I’m experiencing symptoms. With that said, I am continuing to meet with doctors. One said there are a variety of ways to approach this he situation and recommended peripheral nerve stim as a first option. I’ll update more as I progress.

[Lissa496]

Oozz,
I look forward to hearing about your results if you get the stimulator put in! Lissa

[debbluebird]

Thank you so much for responding. That helps me a lot in understanding what to expect. I was not aware that your RLS was caused by pinched nerves/back issues. Your RLS has been somewhat harder to treat, correct? Do you think that is because the pathology is different - not neurological.

Mine is definitely neurological and hereditary, but I have a lot of hope for the spinal stimulator and counter stimulation as a therapy. Any physical touch relieve relieves my urge to move, even if it is not where I’m experiencing symptoms. With that said, I am continuing to meet with doctors. One said there are a variety of ways to approach this he situation and recommended peripheral nerve stim as a first option. I’ll update more as I progress.

I also have hereditary influences too. It has been hard to treat. I started getting it in 1990 on a regular basis. Before that I discovered that if I took Sudafed, it caused my RLS. Also back then Doctors weren't very knowledgeable.