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Peripheral nerve stimulators

Neuropathy | Last Active: Oct 16, 2023 | Replies (259)

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@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

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Replies to "@faithwalker Hi Renee, Yes, I do think they screwed something up with my DRG. I just..."

Hi Lori @lorirenee1 I would think the connections would be the same with the stimulator no matter which lead is used. The difference with the leads may be the width and length. I know in a circuit the length and diameter of a wire can cause a different output. The longer the wire the resistance increases. As the diameter increases, the resistance decreases. Not sure if that output will be significant enough for the stimulator. Will be interesting what you find out from your experience. Worth a follow up anyways. Toni

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’m not sure they used the wrong leads or programmed your stimulator only to where you have to adjust it? Or maybe your Continuous was programmed while you were still inflamed and you couldn’t reduce it far enough when the inflammation subsided...
Lots of factors

As for connection to the leads, your type of connections and type of battery of your stimulator is up to your surgeon and provider.

You can have various types of both. Connected leads Wi-Fi leads rechargeable batteries standard interchangeable batteries.

It all depends on the type of leads used, output and expected programs utilized, and foreseeable changes in disease state. These factors will affect the selection process.

I was diagnosed with progressing CRPS Type 2 with high interchanging evolving nerve pain which was not manageable with conventional pain medications.

I don’t know or need to know y’all’s diagnoses but I hope I’m being clear here. The pain doctors are passing SCSs because they are not opioid. However that does NOT mean everyone with Chronic Pain is a candidate for one.

I spoke to my psychologist last week and he is finding cases when people are receiving a SCS WITHOUT the mandatory pre-psych evaluation. You must have this BEFORE the trial. Why? The trial is not the same as the implant as many if not most discover. Is the pain neurological or contributed to by other causes or made worse or impeded by other issues including psychological ones that will complicate the usage of a SCS?

This mandatory psych eval is vital to the success and prevention of improper use of risky, expensive, time-consuming, frustrating therapy that can lead to dangerous if not life-threatening consequences.