1. < Spine Health

Has anyone had the Stimwave spine stimulator installed?

Posted by WS4K @ws4k, Dec 12, 2018

Hello to ALL! I have a severe back injury and even after three surgeries and several fusions, I am still experiencing severe and chronic pain. My pain management specialist is talking about a spine stimulator. After some research I located the Stim Wave. With this unit, only the leads are implanted. No wires come through. The antenna is worn like a pager on your belt.

Has anyone tried one of the Stim Wave stimulators yet? Any feed back on them?

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

jlssurplus | @jlssurplus | Mar 25, 2021
In reply to @celinec "The best info I can suggest is to get a second or even third opinion before..." + (show)
@celinec

The best info I can suggest is to get a second or even third opinion before your wife decides to have this surgery. Also make sure they, the doctor not rep, can answer any specific questions you both have. Also ask about adverse effects of the device. I have a stim in my upper thoracic that now needs to be removed. They do seem to work for some people, so again just be sure you trust the doctor and he answers any and all questions.

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Can I ask why you are having it removed and what model?

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1 reply
celinec | @celinec | Mar 25, 2021
In reply to @texasaviatrix "Hello, I know this inquiry was several years ago, but thought maybe my experience would be..." + (show)
@texasaviatrix

Hello,
I know this inquiry was several years ago, but thought maybe my experience would be helpful to others who are searching this topic.

I am currently in the 3rd day of a Stimwave trial and have not yet achieved any relief. The technicians changed the program once, but it actually increased my pain, so they backed it down again. I have another 4 or 5 days of trial to go, so I’m not giving up. After 17 years of chronic lower back pain (right side only), I’ve tried just about everything.

Four years ago, I had the Nevro spinal cord stimulator implanted and was completely disappointed. We seemed to get relief for a few days in the beginning, but it went away and we’ve NEVER been able to duplicate it. The Nevro technicians have been diligent in trying new programs and settings, but with no luck.

Before the Nevro stimulator, I had a morphine pump for 8 years. It worked for 6 years before malfunctioning. It also caused severe brain fog and short term memory loss. For those reasons, I replaced it with the stimulator. I understand that some people have had good results with it, but I’ve now had several doctors tell me that they are seeing more and more people having them removed. I had high hopes for Stimwave and am not giving up yet. But I’m not going ahead with surgery unless I experience significant relief.

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I do not want this to influence your decision. I have a Stimwave in my upper thoracic, implanted in 2017. I am currently in the process of having Stimwave now remove it which has not been easy. The pain relief had stopped by 2018 and I discontinued use for a few months. The pain was so severe I decided to try again. By the beginning of 2019 I began falling, while completely conscious. Seizure or dystonia type activity began at the same time, even after discontinuing use right away. They believe it has migrated. I am not only in pain from my original conditions now, but also at the placement and anchored sites, with continued dyskinesia and muscle spasms, some to the point of muscle lock at the anchor site. This may have been Dr error however cannot be sure until they finally get me imaging. Good luck!

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2 replies
celinec | @celinec | Mar 25, 2021
In reply to @jlssurplus "Can I ask why you are having it removed and what model?" + (show)
@jlssurplus

Can I ask why you are having it removed and what model?

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Can you see my reply to @texasaviatrix ?

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jlssurplus | @jlssurplus | Mar 25, 2021
In reply to @amandajro "Hello @jlssurplus and welcome to Mayo Clinic Connect. Your wife and certainly been through quite a..." + (show)
@amandajro

Hello @jlssurplus and welcome to Mayo Clinic Connect. Your wife and certainly been through quite a lot with regard to her six surgeries.

You will notice I have moved your post into an existing discussion on SCSs to allow you to better connect with this group of members already discussing the topic. Recent members discussing their experiences include @texasaviatrix @1mepnurse @martyk and @celinec.

While we wait for members to join, you mention the pain clinic providing limited information to you. What have they shared? What haven't they shared that you are looking to learn more about?

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When she started considering the SCS her pain the CNP she has seen for years basically couldn't tell me which doctor in the clinic would do it and usually you do not need consultation with Dr.
It was like just do the psych exam get imaging together and lay on the table.
I had CNP talk to Dr. about Thoracic coverage and which SCS would work best. She thought Boston Sci but gave no reason.
I talked to a neuromodulation nurse and all he could on provide was info from Rep he talked to about it.
We do have a consultation with the Dr. coming up to ask a lot of questions.
My wife would be willing try anything so I have to hold her back.
I am her health advocate & caretaker and have always done a lot of research after her back was (I think) not done well and she had a crackpot pain Dr. that put her in ICU. (Not current one)
I guess my biggest concern is the thoracic coverage, type of lead and attachment/entry point due to her extensive hardware and adverse effects?

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jlssurplus | @jlssurplus | Mar 25, 2021
In reply to @celinec "I do not want this to influence your decision. I have a Stimwave in my upper..." + (show)
@celinec

I do not want this to influence your decision. I have a Stimwave in my upper thoracic, implanted in 2017. I am currently in the process of having Stimwave now remove it which has not been easy. The pain relief had stopped by 2018 and I discontinued use for a few months. The pain was so severe I decided to try again. By the beginning of 2019 I began falling, while completely conscious. Seizure or dystonia type activity began at the same time, even after discontinuing use right away. They believe it has migrated. I am not only in pain from my original conditions now, but also at the placement and anchored sites, with continued dyskinesia and muscle spasms, some to the point of muscle lock at the anchor site. This may have been Dr error however cannot be sure until they finally get me imaging. Good luck!

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Thank you much 🙂

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jlssurplus | @jlssurplus | Mar 25, 2021
In reply to @martyk "Good advice! Do your research" + (show)
@martyk

Good advice! Do your research

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It seems to be hard to find unbiased info. I have only found 1 study in pain physician journal so far. If anyone has any other please let me know.

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texasaviatrix | @texasaviatrix | Mar 25, 2021
In reply to @celinec "I do not want this to influence your decision. I have a Stimwave in my upper..." + (show)
@celinec

I do not want this to influence your decision. I have a Stimwave in my upper thoracic, implanted in 2017. I am currently in the process of having Stimwave now remove it which has not been easy. The pain relief had stopped by 2018 and I discontinued use for a few months. The pain was so severe I decided to try again. By the beginning of 2019 I began falling, while completely conscious. Seizure or dystonia type activity began at the same time, even after discontinuing use right away. They believe it has migrated. I am not only in pain from my original conditions now, but also at the placement and anchored sites, with continued dyskinesia and muscle spasms, some to the point of muscle lock at the anchor site. This may have been Dr error however cannot be sure until they finally get me imaging. Good luck!

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Wow, I am so sorry to hear this! Although my Nevro spinal cord stimulator
was a failure, it didn’t cause any additional problems. I am now in day 8
of the Stimwave trial and can honestly say it is completely covering my
pain. But my pain is in n the right lateral cluneal nerve and I don’t know
where yours is. I purposely extended the trial out to 12 days to be
certain before I have the thing implanted. But your experience is giving
me serious doubts. I go in on Monday to have the leads pulled on the test
model. I will have a lot more questions for the doctor before agreeing to
permanent implantation.

Thank you for sharing your story!

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1 reply
texasaviatrix | @texasaviatrix | Mar 25, 2021
In reply to @amandajro "@jlssurplus I found these stories that may be of interest to you as you research SCSs...." + (show)

Thanks for the info, but these two cases are drastically different from mine and cannot compare. I’ve had a Nevro stimulator implanted for over 4 years and, despite the technicians’ continual tinkering (changing programs, stimulation strength, etc), they have been unable to give me any relief.

I am currently in the middle of a trial of the Stimwave stimulator. Unlike Nevro, it is not a spinal cord stimulator, but a peripheral nerve stimulator. The leads are placed near the known affected nerve rather than in the spinal column. After 8 days, I can report that the targeted pain is greatly decreased. But I am concerned about one person’s experience (related to me in this discussion group). They said that their Stimwave stopped working after a time and actually caused more pain. I would like to hear from others who have the Stimwave peripheral nerve stimulator to hear what their experience has been.

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