Peripheral nerve stimulators

Lori and @sprinrosa64, who are the people that surgically implant these devices in your body? Are they MD's? Or some kind of technicians? I would think that person should have to have had years of anatomy and physiology and a great deal of Neurology studies to know and understand the location of nerves and other body parts and the variations they're often are in each person's body. This whole thing got me wondering because ever since I have read about people on the blog who use these, it seems you guys all have the same stories. They work at first but maybe after 3 months not so much and can cause their own set of problems. I could have overlooked a success story or two but mostly I recall problems. This will be interesting to see what the answer is. I wish the very best for all of you, Sunny flower

@faithwalker Hi Renee, Yes, I do think they screwed something up with my DRG. I just could not tolerate it anymore. I was feeling terrible electric sensations in my butt cheeks, shins, and right around where the leads are. Can you tell me what makes you feel they have used the wrong leads? I never even knew there were choices of leads. This information may be useful to me, and if you happen to know why the leads may be wrong, do me a favor and let me know. Thanks so much, LoriRenee1

@faithwalker Hi Renee, Yes, I do think they screwed something up with my DRG. I just could not tolerate it anymore. I was feeling terrible electric sensations in my butt cheeks, shins, and right around where the leads are. Can you tell me what makes you feel they have used the wrong leads? I never even knew there were choices of leads. This information may be useful to me, and if you happen to know why the leads may be wrong, do me a favor and let me know. Thanks so much, LoriRenee1

It depends on what kind of pain you are treating— peripheral nerve pain, diabetic neuropathy, CRPS neuropathy in the limbs, fibromyalgia, etc.

There are two types of leads— the string lead and the paddle lead with various designers and manufacturers of both for the different styles of SCSs (DRG and others.)

After the mandatory psychiatric evaluation and 3-4 day trial using the inserted spinal subcutaneous string lead and external programmer and battery, the relief of the trial is evaluated and discussed with the patient-(neurologist)-pain specialist AND the SCS’s specialist. (In my case, the DRG SCS specialist was a surgeon and actually inserted my trial. My Pain Specialist cut his hand branding his newborn cattle and young foals the previous weekend and could not do the surgery.) My DRG is made by Abbott-St Jude.

If your trial is ruled successful (with PRONOUNCED RELIEF) and your psych eval compatible with permanent implantation, a date in a month or two will be slated with a 2-3 day hospitalization for Permanent implantation. This stay is because the procedure is invasive in multiple sites as well as within the body and recovery is physically limiting, painful and requires full bed rest and pain therapy and assistance for a minimum of 24 hours. It also requires antibiotic and physical therapy due to invasive insertion of the lead(s) beneath the subcutaneous space along the appropriate area (s) of the spinal column. AND the wire which connects to the much larger rechargeable or standard battery system inserted along the hip which operates the system as desired by the selected program.

After implantation, your system is INACTIVE. It will not be ACTIVATED until the representatives of your SCS arrive to your hospital room and program it for you. When they arrive, the programmer will ask you questions about your neurological peripheral pain.
1. Where is it? Leg, arm, foot, ankle, shin, neck, collar bone, right, left
2. What does it feel like? Hot, cold, stings, cuts, tingles, itches, can’t touch it, etc
3. When did it start? Is it better or worse today? How? Why?
4. What kind of pain is the surgery causing you? Is it better or worse today? How? Why?
5. And on and on, so be ready.

——-

Then the programming will begin.

There are TWO settings on the Abbott/St. Jude DRG SCS. I don’t know about any other SCS so please, if you have a different SCS (DRG or not), please comment about your programming if it’s different. I will describe my programming.

1. The Shock Program, individual adjustment accessible: (Feel the power of relief, Feel more pain if use too long)

These programs are for days that pain is out of control or NOT RESPONDING TO ANYTHING ELSE.
You adjust the power of the program and leads individually by feel and relief of pain. The adjustments you make literally block the pain receptors causing you pain with the adjusted electricity from the individual links within your PADDLE OR STRING LEAD.
These types of programs can and will be set up by your SCS programmer because they are your PRN PROGRAMS. You use these when the pain is uncontrollable or breaking through any and all pain medications AND you stimulator. It is NOT for full-time use. It will OVERLOAD your pain receptors and cause more systemic pain than you initially have ever had before.

2. The Continuous Program: (Round and round we go, where we stop is when we know)

The Continuous Program, contrary to what it sounds like, CANNOT and SHOULD NOT be felt by you... except during programming. After these programs are evaluated, adjusted, and programmed by your SCS rep, they should be set and left. After running for several days, the relief should be measurable even if not total. You may adjust them up or down by complete setting (22, 23, etc.), but the individual links in the leads are NOT accessible like in the SHOCK programs.
The CONTINUOUS PROGRAMS are the Extended-Release versions of SCSs. Use them as such.

Continuous Program Dosages can be increased or decreased as with your whole number adjustments, but your actual Continuous Programs (drugs) can only be altered at your appointments with, by your SCS Representative.

Your Shock Programs can be used for needed for breakthrough pain. You can pick one or more Shock Programs if accessible, adjust various strings in the leads (as programmed to) up out down in intensity to affect the pain receptors), and report results to your pain specialist and your SCS rep to either use again or program a more effective Continuous Program and/or Shock Programs to help your pain management using your implanted SCS.

This process is not a quick or easy one. It takes patience, self-treatment and evaluation, good communication skills, and journaling. Above all else, you cannot give up or be overly dramatic or emotional when dealing with this type of treatment.

It is also not intended as a first course therapy for any type of pain. It’s invasive, complicated, and extremely risky to someone in severe pain especially with Complex Regional Pain Syndrome and no possibility of remission like myself with Type 2 CRPS or Causalgia.

Spinal Cord Stimulators should NEVER be used in a person with central nervous system rooted pain, pain that is actively spreading to other areas of the body, central neurological or internal organ nerve pain, cranial nerve pain, or any other neurological pain a SCS has not been proven to relieve or treat.

If your pain specialist or primary care provider promotes a SCS, DRG or otherwise, make sure that you have the appropriate diagnosis for such a treatment and invasive procedure.

I have CRPS and have DRG SCS. It was implanted 2 years ago this month. It is not the equivalent of the trial and although I was not told as I should have been, I now know, 95-99% of all DRG and regular SCSs are exactly the same. The trial relieves more pain than the permanently placed stimulators. It’s an usual complaint and should be told to all patients before they undergo the procedure.

Very few people will receive total relief from a Spinal Cord Stimulator Placement.

I have and continue to receive 15-20% relief from mine and for me and my provider, that is more than worth it! We can reach the remainder of my 40-50% relief goal with opioids. Will I ever achieve a higher goal?

Maybe, if my Abbott representative and I get to meet ever again and hash out some more programs, both Shock and Continuous. We can probably increase the percentages more.

Such great info Renee. I so wish 100% relief for you and everyone here! @lorirenee1

Renee, WOW! I had no idea all of this was involved in getting a DRG implanted!! As it should be! I feel much better about all of your safety now!! I wish they worked well for all of you.

They want to install a similar device to give the signal back to my bladder and it's done in two steps like you described Renee.

All the best, Sunnyflower. @lorirenee1

@sunnyflower @faithwalker007
Sunny I agree with you. Renee is providing some extremely useful info, a lot of which I do not get the feeling everyone who receives these implants get. Maybe they are told some of this but perhaps some of it whizzes right past their heads. One BIG item is that from what I gather, many/most who receive these devices are not told (or don't hear) that the trial version is likely to give better pain relief than the permanent version. If this is not being told as well as emphasized that sounds like malpractice. Who would not want to know this up front, even before the trial? I know that it was a surprise to Lori @lorirenee1

I do think I heard a couple people describe their stimulators as a success, similar to Renee. Partly I think it's a matter of not expecting too much from them. One was @fredjan2016 who said it did not relieve pain as much as it helped him to stand up for longer periods (if I am remembering correctly). There was someone else, a lady, who also mentioned her unit as being an unqualified success, I believe she had what she referred to as an SCS. But I agree with Sunny, most of the stories I have heard people tell amount to what sound like failures.

Renee, I know you already know this, but I'll say it again, you are a fount of knowledge and experience, and an excellent explainer of same. What a service you do here for people! Best, Hank

A neurosurgeon will implant the permanent SCS.

Lori and @sprinrosa64, who are the people that surgically implant these devices in your body? Are they MD's? Or some kind of technicians? I would think that person should have to have had years of anatomy and physiology and a great deal of Neurology studies to know and understand the location of nerves and other body parts and the variations they're often are in each person's body. This whole thing got me wondering because ever since I have read about people on the blog who use these, it seems you guys all have the same stories. They work at first but maybe after 3 months not so much and can cause their own set of problems. I could have overlooked a success story or two but mostly I recall problems. This will be interesting to see what the answer is. I wish the very best for all of you, Sunny flower