Peripheral nerve stimulators

What did you hear about Stimwave that was negative?. There is now published research about Stimwave helping pudendal nerve pain and none for Nalu. I had a DRG trial that failed and am planning to try Stimwave next because there seems to be more evidence.

I just finished a NALU PNS trial in Calif with a Dr Ramana Naidu. It was an excellent experience in most ways but unfortunately PNS did not work for me . I chose Nalu because the literature that I could see and word of mouth seemed to suggest NALU being the best. However there are no independent studies out yet on these expensive devices …the studies out, are all ones done by the company themselves as part of their R+D. I had heard by word of mouth that Stimwave had a few problems . Couldn’t find any anecdotal evidence for NALU but through a few webinars and things ,it seemed to me to be the one to try. It’s design is the best in my opinion too …including that you can trial it for a week just like you can an SCS device. Expense wise this is good because I am a self pay living in Canada , so I have no coverage . I already had to pay for 2 DRG experiences …one trial with implant , then when that stopped working , another trial . A huge amount of my retirement savings went on this ( I’m 62..it happened when I was 51.)
The Nalu trial procedure was simple , I had excellent follow up and frequent adjustments by the company rep during the trial …it just didn’t help.
I went to Dr Naidu as when I looked into the world of PNS his name kept coming up and he is very approachable . He was convinced NALU was the right thing for me to try and when I looked into it , I agreed. He is friendly , knowledgeable, seems to listen to understand your situation and is technically excellent.
I just got home 3 days ago after a 10 day trial. It’s very slick technology . Unfortunately, from a peripheral therapy point of view , I’m sort of at the end of the line and don’t know what I’ll do next . Give up or keep looking ?
. Local anesthetic works like magic …you would think there would be something out there that could block a nerve's signal in the same way a local anesthetic does , but without the need for injections of a chemical that scars the tissues eventually .
If anyone has any connection with ideas along these lines , let me know . I am looking for a peripheral physical intervention that mimics local anesthetic. ( for the purposes of this discussion.)
I am very aware and have been involved with the huge world of chronic pain theories around neuroplasticity and centralization …that is not for this discussion . I have one very accessible nerve in my thigh causing the problem.
I’m looking for something that doesn’t involve surgery ,RF, temperature high or low , saline , sugar , ketamine , etc etc . I need something that mimics how local anesthetics work thats doesn’t damage tissue .
I would appreciate if anyone has any ideas along these lines. I’m also happy to answer questions about my experience. I’ll try to be better at replying to this forum .

Physicians, and manufactures of medical equipment.

alh, if you find something that works please post it here. I read these posts every day and can’t imagine a better place to get information. Doctors don’t have it which is so sad because I run into people every day who have neuropathy. Maybe in the grocery store, guy at the café, etc. etc. there must be a solution somewhere and I would be delighted to hear that you’ve discovered one. Blessings to you, bcool123

If a company is publicly-traded, securities' analysts following it frequently are the canary in the coal mine about any problems with its key products. The institutional investors in Peloton were dumping the stock while it's sales were still growing despite the injuries and deaths of pets and toddlers under the stupidly-designed treadmills. And a subscription to the email notifications from the FDA about food, drug and med equipment recalls or investigations is a free resource. ('Free meaning you don't pay for it because it's funded with the taxes you already have to pay.)

For drugs, the FAERS public access to post-approval negative side effects ("adverse effects") is another canary in the coal mine. You can search by drug name and then sort the results in myriad ways including by adverse effects. (Amgen's Prolia has 117,000 reported side effects not listed in the company's package insert for consumers. 60,000 in one 2-year period. It's been on the market in the U.S. for just under eleven years. It's an injection given every 6 months. Meaning once in the body, it's, well, in the body until it's finally not.)

Thank you for the information it helps that somebody cares

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.