Peripheral nerve stimulators

Hi Lori @lorirenee1 nice to hear from you! Every day is certainly a challenge for us. My daily goal is to do what I can just to make it through the day. Being able to sit down is a big deal. I am glad that the pain has settled. I am with you regarding your peculiar shin sensations. I hope that also goes away eventually. I have been through shocks a few times myself. I don’t recall any residual effects after like muscle soreness. I did have my bodily sensors intact then. Have you tried a fan blowing on your shins as Hank @jesfactsmon suggested Linda does for her feet? Here in central Florida I always have the ceiling fan on while I sleep. It seems to help.

How do you manage without depth perception? Doesn’t it affect your balance at all? I know it does for me because stepping on a soft surface is difficult for my brain to maintain my balance. Outside surfaces like a lawn or gravel are extremely difficult to walk on without a quad cane. I am able to go grocery shopping by using the shopping cart to hold on to so I can walk. The shopping cart becomes my walker.

I have visited the website for assistance with neuropathy using VR therapy. It offers help in 2 ways. One is the VR goggles and the other is using your phone. Have you tried your phone for the exercises? That should be better for you.

Thanks for asking. I feel better now that I got rid of that awful burning in my stomach and esophagus. It would last all day. Sometimes too much of a supplement may not be good either so I rely on a balanced diet. As a result of stopping the eye exercises my motion sickness has decreased to what it was before. I feel my double vision has improved slightly. I tried the eye exercises as you did the stimulator. We learn what is best by the process of elimination since the health industry provides no answers. I am waiting to try corrective eye surgery next to align my eyes and eliminate the diplopia. My neuro ophthalmologist believes the majority of my motion sickness is due to the misalignment of my eyes. We can have several health issues without our nerves or bodily sensors to send accurate signals to our brain so our brain can fix a problem or allow us to do tasks. Simple things to a normal person can become BIG challenges for us. Hang in there Lori. I wish you the best to relieve your pain. Toni

@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

@sprinrosa64 Hi. My leads are at my lower back (lumbar spine). They hang around the DRG nerves located there. My battery is on my left side, right above my waist. Make sure they place your battery very carefully at a place you can't feel it when you sit back on a chair, or lay down. My best to you, and I hope I did not upset you too much. This is difficult stuff. LoriRenee1

@avmcbellar Hi again, Tony, We certainly never know when or why health challenges come our way! You took such good care of yourself, you now take such good care of yourself, and yet, when your brain signals, bodily sensors don't work right, we don't work right. Yes, simple things become a challenge, and life can change in an instant. Would you have ever believed the changes you have gone through? I know I wouldn't have. I am at least glad that your stomach is doing better and your motion sickness is a bit less from not doing your eye exercises. I hope that you can get your eye surgery to help you. I have become so damn fearful of surgery, but sometimes it does help! Maybe after Covid, you can do your surgery? As far as living without depth perception, my eye doctor is amazed that I never saw double, but my brain adjusted itself to my eye problem. My eye doc also says I see things flatter than they really are, but I don't know the difference! I have always lived with these eyes of mine. I do notice however, that I tend to pour things too full or too empty, drive only locally, as I just don't see space all that well. I stay on roads I know and never drive in darkness. I also grew up with an eye specialist, and did regular eye exercises. I don't remember why! I will look at that VR therapy site again, and see if I can do something without the goggles. Anything to distract from pain! As far as sleeping with a fan, yes, I do, and sleep with icepacks on my shins. Seeing the Pain Doc in a few weeks to see why I have all this new pain, but he does say that sometimes the pain stimulator electricity can cause pain. Oh joy. Anyway, thanks so much for reaching out to me. Mayo Connect has had me meet really good people. That is the one joy of being sick. Nothing else. Love to you, Lori

Above your waist line???!

Mine is below my hip above my right buttock to the right of where I sit and below my bikini line. Not that I wear bikinis.

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

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

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.

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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.

A neurosurgeon will implant the permanent SCS.