HFX/NEVRO Stimulator for Neuropathy

Posted by trustin356 @trustin356, Sep 19, 2024

I have had neuropathy for several years as well as back pain (result of back surgery (lumbar laminectomy) and have in the past gotten cortisone shots for the pain. The last time I went to my pain doctor, he recommended that I see a neurosurgeon to discuss a fairly new device specified for neuropathy and back pain.
I visited the neurosurgeon and he told me about the device. It is a spinal simulator with which they have also seen positive results for back pain and also for neuropathy. I agreed to try the device and a test was scheduled to attach a test device externally. I did the test for a week and the results were positive. About 90% of my back pain was gone and my neuropathy, although still there, was better.
Following the test period (one week), the neurosurgeon and I agreed that the device would work on my pain and I was scheduled for surgery to implant the stimulater in my lower back with leads attached to my back (epidural area).
I have had the implanted device for almost 2 months and have been trying (with help from the HFX coordinating team) to find the right setting on the device. I have experienced dome pain relief in my back but little to no relief in my feet. I am still working with the coordinating team to find the best setting.
Sorry this is long but I would like to know if anyone else has had experience with the device.
Thanks for any input!

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

Profile picture for trustin356 @trustin356

My surgeon and care team did not give me the option of using the iQ version so I am stuck with the remote. Also, I had the implant last August and have been back to see a care team member one time. Have not had an appointment scheduled with the pain doctor. I have to call the care team to get any assistance with the settings.
I did find a program that seems to work during the day but I have to turn it off at night because the regular daytime setting has an actual stimulation which acts like a “ heavy duty tens unit”.
I am currently waiting on a call back from the care team to see if they can help me with one of the settings.

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The NEVRO HFX app is available for apple iPhone )not android phones yet, but soon).
If you have an iPhone and want to do it this way, speak to your NEVRO rep to help you turn it on this way instead of manually . They have a 24 hour phone number to always help you with anything.

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Profile picture for Mariette R. @marietter

The NEVRO HFX app is available for apple iPhone )not android phones yet, but soon).
If you have an iPhone and want to do it this way, speak to your NEVRO rep to help you turn it on this way instead of manually . They have a 24 hour phone number to always help you with anything.

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When I talked to my surgeon and pain doctor they both said that the app was available but would not work in my location. I will be checking with them again to see if that has changed.

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Profile picture for trustin356 @trustin356

When I talked to my surgeon and pain doctor they both said that the app was available but would not work in my location. I will be checking with them again to see if that has changed.

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In the meantime, keep in touch with the support team through their 800 number.

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Profile picture for alabamasweetie336 @alabamasweetie336

I am considering getting the Neuro HFX and I would like to know if anyone can tell me if it work's on the numbness and tingling. I'm currently going to a pain clinic and the meds aren't controlling my pain. Any information would be appreciated.

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I got one and it does not help me.

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Profile picture for trustin356 @trustin356

I am now to the place where I am considering having the Stimulator removed from my back. It is BARELY helping my back and has given me VERY LITTLE relief for my Neuropathy.
Anyone have any experience getting the device removed?

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I am having the same issue and considering removal .

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As I stated in an earlier post in this discussion, I have had the Hevro/hfx stimulator almost and FINALLY got to a program/level that is giving me SOME relief. I worked with the HFC coordinator and she found a setting on my device that has a program that gives me the "Tens" unit simulator. This setting seems to give me more relief than any other. I can't leave it on that program overnight (lying down makes the stimulation very strong).

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I have had the Stimulator for 18 months for nerves being severed during back surgery.
I have had great amount of relief but it is not perfect. When I need an adjustment it is sometimes hard to find the new level. However, prior to the Stimulator I was unable to be on my feet for more than 5 minutes and I was pretty much in a wheel chair.

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Profile picture for trustin356 @trustin356

I had a Nevro stimulator placed in my back for back pain (I had a lumbar laminectomy in 1999) in July 2024. Prior to getting the stimulator, I had gotten steroid injections that really helped for about 4-5 months. I also have neuropothy in my feet which is my most critical issue.
I have worked with the Nevro consultants since the implant with hardly any success. The pain in my feet is NOT being addressed by the stimulator although the neurosurgeon said it "should help".
I am now to the point that I am considering having the implant removed. I isn't addressing the back pain either.
I would strongly suggest that you do the test with the external device and be VERY AWARE of any pain relief you get. THEN decide if you want the implant.
Good Luck@@

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is this stimulator only for neuropathy with pain? My dad has has numbness...no pain or tinging for years and I am trying to find something to help him. So many Drs have told him there is nothing that can be done for non diabetic neuropathy.
any suggestions would be greatly appreciated.

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Profile picture for lizzy2121 @lizzy2121

is this stimulator only for neuropathy with pain? My dad has has numbness...no pain or tinging for years and I am trying to find something to help him. So many Drs have told him there is nothing that can be done for non diabetic neuropathy.
any suggestions would be greatly appreciated.

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Hello @lizzy2121, Welcome to Connect. I wished there was one magic treatment that would work for everyone with neuropathy to provide some relief. I'm 82 and have had neuropathy since my mid 40s that started in my toes and now is just above my ankles. I only have the numbness also. I did start taking supplements after finally getting a diagnosis in 2016 and while they seemed to have stopped or slowed the progression, I still do have the numbness. There's really no medication that I know of that is helpful for the numbness but I do think there are things we can do to improve our quality of life. The Foundation for Peripheral Neuropathy has some good info on that here - https://www.foundationforpn.org/living-well/.

One thing I try to do every night is to put a lotion on my legs and feet to keep the skin from drying out since the peripheral nerves are near the surface and it's best if the skin doesn't get dried out. One of the better lotions I've found calming on my legs is LifeFlo Magnesium lotion which is not too greasy. They also have a spray on Magnesium oil but I've found that too oily. Daily exercise is helpful for me also.

There is a discussion which you may find helpful for your dad.
-- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/

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This sounds exactly like my experience. I had a terrible herniated disk over 10 years ago. I had spine surgery in May 2015. I have never walked correctly since. I still have pain and take oral pain medication. I also have peripheral neuropathy as well. I take gabapentin daily. Nothing has really helped long term. The medications help to temporarily ease the pain. About 10 months ago, I had a spinal cord stimulator implanted in my back also. The stimulator has helped so-so with my back pain but I really can’t tell any true improvement with my neuropathy. My spinal cord stimulator is an Abbott. All in all, I feel the hassle of recharging makes the whole ordeal of having stimulator more of a hassle than a help. If I had if to do over and know what I do know about my stimulator, I would not have had one implanted.

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