1. < Neuropathy

Stimwave user here: What's been your experience?

Posted by donw @donw200, Aug 20, 2019

Like most of us, I did not want a battery implant so I went with Stimwave scs. Its been permanently placed on my spine about 10 days ago. I do feel a little less pain, but my right foot nerve pain still prevents me from sleeping normal hours, preparing home meals and doing normal tasks. I am disappointed. I was hoping for more relief. My worst pain bursts went from 10 to 9. Plus, I still need pain pills.

Interested in more discussions like this? Go to the Neuropathy Support Group.

lorirenee1 | @lorirenee1 | Aug 23, 2019
In reply to @rwinney "Stimwave, stimulators, implants...I have yet to explore any of these options simply because I do not..." + (show)
@rwinney

Stimwave, stimulators, implants…I have yet to explore any of these options simply because I do not believe any one unit can prevent my pain from head to toe. I understand it working on an isolated area such as the feet or back but not multiple areas throughout the body. Please feel free to correct me if I'm wrong and can attest as living proof of full body relief.

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Not sure at all about head to toe body relief. I have foot problems only, but severe. My problem is that the thought of an implant spooks me out, and it was after surgery, that all my neuropathy problems started. So who wants to do more surgery? Frightens me to death. You hear both good and bad with all these gadgets. Feel like its a bit of a crap shoot….oy. Lori Renee

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lorirenee1 | @lorirenee1 | Aug 23, 2019
In reply to @rwinney "Also, I'm so frustrated because I want to try cbd creams and such but honestly, I'd..." + (show)
@rwinney

Also, I'm so frustrated because I want to try cbd creams and such but honestly, I'd go broke needing so much coverage. Can anyone relate?

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You are better off just trying one great CBD oil, put under your tongue. The oil helps everywhere. I swear by it. Better than the Gabapentin, and other neuropathy meds. Let me know if you want info on a good CBD oil. Lori Renee

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5 replies
lorirenee1 | @lorirenee1 | Aug 23, 2019
In reply to @lisalucier "Thank you for taking the time to explain what did not work for you, @lorirenee1, as..." + (show)
@lisalucier

Thank you for taking the time to explain what did not work for you, @lorirenee1, as well as what has provided some relief. I know many members here are looking into a variety of therapies to try and help with neuropathy symptoms.

Some others who may be interested in reading what you wrote about what did and didn't work for your neuropathy symptoms include @lynnaustin @johnbishop @helennicola @sherryw @notborntoburn @rwinney @jimbotch @vradifegari. They may have some comments on their own experiences with these or other treatments, including the wireless spinal cord and peripheral nerve stimulation @donw200 talked about.

What have you found has the longest relieving effect, lorirenee1? What effect did you find the frankincense and myrrh had? Does the water spa help more with burning, pain, tingling?

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The Kratom has had the longest positive effect. The water spa is just soothing, because the neuropathy tires my feet very badly. The Frankincense takes away aching and throbbing. Good stuff. Lori Renee

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1 reply
helennicola | @helennicola | Aug 23, 2019

Hi Lorirenee, I would love to know which CBD oil you are referring to, does it contain THC? I have had no success with non THC CBD oil. Thanks, Helen

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Mentor
Rachel, Volunteer Mentor | @rwinney | Aug 23, 2019
In reply to @lorirenee1 "Not sure at all about head to toe body relief. I have foot problems only, but..." + (show)
@lorirenee1

Not sure at all about head to toe body relief. I have foot problems only, but severe. My problem is that the thought of an implant spooks me out, and it was after surgery, that all my neuropathy problems started. So who wants to do more surgery? Frightens me to death. You hear both good and bad with all these gadgets. Feel like its a bit of a crap shoot….oy. Lori Renee

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Don't blame you a bit! I'm sorry for your pain.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Aug 23, 2019
In reply to @lorirenee1 "You are better off just trying one great CBD oil, put under your tongue. The oil..." + (show)
@lorirenee1

You are better off just trying one great CBD oil, put under your tongue. The oil helps everywhere. I swear by it. Better than the Gabapentin, and other neuropathy meds. Let me know if you want info on a good CBD oil. Lori Renee

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Thank you so much and yes a recommendation would be super helpful and much appreciated.

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Aug 23, 2019

@lorirenee1, @rwinney, Me too, @lorirenee1, I am always interested in the medical cannabis that folks have chosen. Just in case you are wanting to know, I use and trust Care By Design in both the 2:1 CBD/THC formula and the 1:1 CBD/THC formula. Higher CBD to THC ratios are also available. You can find them discussed on the site: http://www.cbd.org

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lorirenee1 | @lorirenee1 | Aug 23, 2019
In reply to @helennicola "Hi Lorirenee, I would love to know which CBD oil you are referring to, does it..." + (show)
@helennicola

Hi Lorirenee, I would love to know which CBD oil you are referring to, does it contain THC? I have had no success with non THC CBD oil. Thanks, Helen

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Hi Helen, I order the cbd oil, 2500 mg. with the legal amount of THC in Illinois. I get it from CBDistillery.com If I remember, it costs about 150.00, or so, and I find it does work for pain. I dont find the lower mg. of the CBD oil very helpful, but I have terrible pain. Everyone is different, but this stuff works for me. Better than Gabapentin.

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donw | @donw200 | Aug 23, 2019
In reply to @lorirenee1 "Hi Don, I am Lori, and I have really bad peripheral neuropathy in my feet. I..." + (show)
@lorirenee1

Hi Don, I am Lori, and I have really bad peripheral neuropathy in my feet. I have tried so many things to help me, that it is crazy. However, I have never heard of that Stim Wave. What is it, and what kind of doctor puts it on your body? Also, one of the only things that helps me, is Kratom. If you want to know about this leaf, let me know. It does help pain. Lori Renee

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Stimwave and several other medical device companies make SCS devices (spinal cord stimulater) that requires a specialist doctor to attach a very thin cord to the spine (an out patient minor medical procedure) and a hand-remote control unit in order for the patient to have more control over their pain. They are also made by Boston Scientific.

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1 reply
donw | @donw200 | Aug 23, 2019
In reply to @lisalucier "Hi, @lorirenee1 - I can imagine that having bad pain in your feet and trying so..." + (show)
@lisalucier

Hi, @lorirenee1 – I can imagine that having bad pain in your feet and trying so many things to help you without success must indeed be crazy. I am glad to hear you are finding some measure of relief. Just wanted to point out this FDA warning on kratom, however, so members can be aware https://www.fda.gov/news-events/public-health-focus/fda-and-kratom.

lorirenee – what treatments have you tried that were not fruitful for your pain?

@donw200 – if you could tell a bit more about the wireless spinal cord and peripheral nerve stimulation you went through, as lorirenee requested, that would be great.

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I first received a Boston Scientific trial SCS and it worked great! Then I was made aware that the permanent one required that the battery be surgically implanted into the area above my left butt/hip. That bothered me immensely. I then pursued the SCS made by Stimwave
because it did not require battery implant. The battery was part of the user controlled hand-remote controller that helps control the pain.
And it would require only one simple outpatient procedure—so I did that trial too. That 4 day trial was not enough time for me to decide so I went on to get the permanent Stimwave SCS, As of now, I think I made a good choice. Although I personally found the Boston Sci.was superior in stopping my right foot nerve pain, it was much easier to "install". And it works somewhat differently. It also has to be adjusted by trial and error (programmed), after it is permanently put in. I can wear it on my belt—-it is discreet looking and batteries need to be swapped every 10 hrs. It uses high-frequency waves to communicate to the spinal "wire-film" within. I think it will work better, but it's only been 9 days.

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