Sensory Peripheral Neuropathy

Posted by summer15 @summer15, Jul 8, 2019

Hello. I'm new to the group. I have read quite a few posts. I have had sensory peripheral neuropathy for 4 years. I have the numbness, pain, tingling in both feet and same in hands. I have had 9 surgeries on my feet and many injections. 3 surgeries on left foot and 6 on the right foot.

I take medication to try to help with the pain. Lyrica, cymbolta, tramadol and oxycodone, Generally the pain level can range from 3 to 8 depending on activity.

I had the triple nerve decompression surgery on both feet, as well as releasing the nerve surgery to cutting the nerve. In April I had the stim router surgery on my right foot. Where a lead is implanted near the nerve and eventually is supposed to give the message there is no pain, rather than pain to the brain. So far I have noticed a slight improvement.

Walking is unbearable after roughly a couple blocks distance. I'm really praying that the stim router gives more improvement with pain as time goes on.
Thanks for listening.

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

Hello @summer15, Welcome to Connect. It sounds like you have tried quite a few treatments and surgeries with only slight improvement in the symptoms. There are few other discussions that you might find helpful.

> Groups > Neuropathy > Young adult with idiopathic sensory axonal neuropathy
-- https://connect.mayoclinic.org/discussion/young-adult-with-idiopathic-sensory-axonal-neuropathy/

> Groups > Neuropathy > Calmare (scrambler) Therapy anyone?
-- https://connect.mayoclinic.org/discussion/calmare-scrambler-therapy-anyone/

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

You mentioned having the StimRouter surgery in your right foot. Do they only do the implant on one foot when your have neuropathy in both feet?

I did find a interesting article on the StimRouter that might be helpful.

Experiences from the First StimRouter Implanted in Patients in Canada
-- https://www.medgadget.com/2018/06/experiences-from-the-first-stimrouter-implanted-in-patients-in-canada.html

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Hi, @summer15 - Glad you've connected with @johnbishop. I also would like to introduce you to @danielad @jenniferhunter @peggyella @oldkarl, who have all mentioned sensory peripheral neuropathy and may be interested in the surgeries and other therapies you've tried. They also may have input on managing symptoms.

How did the triple nerve decompression surgery on both feet go for you, @summer15?

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@johnbishop

Hello @summer15, Welcome to Connect. It sounds like you have tried quite a few treatments and surgeries with only slight improvement in the symptoms. There are few other discussions that you might find helpful.

> Groups > Neuropathy > Young adult with idiopathic sensory axonal neuropathy
-- https://connect.mayoclinic.org/discussion/young-adult-with-idiopathic-sensory-axonal-neuropathy/

> Groups > Neuropathy > Calmare (scrambler) Therapy anyone?
-- https://connect.mayoclinic.org/discussion/calmare-scrambler-therapy-anyone/

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
-- https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

You mentioned having the StimRouter surgery in your right foot. Do they only do the implant on one foot when your have neuropathy in both feet?

I did find a interesting article on the StimRouter that might be helpful.

Experiences from the First StimRouter Implanted in Patients in Canada
-- https://www.medgadget.com/2018/06/experiences-from-the-first-stimrouter-implanted-in-patients-in-canada.html

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Hello. Great to meet you John. I love the Bioness post. I love the Stim Router so far. It has only been a couple months but I have noticed a decrease in pain when I wear it. You have to take it off every 4 hours to charge. My Dr wants to give it about 6 to 8 months before doing the left foot to see how the results are for the right foot. Sorry I misspelled Sensory. It was 1am lol.

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@lisalucier

Hi, @summer15 - Glad you've connected with @johnbishop. I also would like to introduce you to @danielad @jenniferhunter @peggyella @oldkarl, who have all mentioned sensory peripheral neuropathy and may be interested in the surgeries and other therapies you've tried. They also may have input on managing symptoms.

How did the triple nerve decompression surgery on both feet go for you, @summer15?

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Hi Lisa. Nice to meet you. The Triple nerve decompression surgeries gave me about 30% relief. I did the surgeries August 2016 left foot and right foot December 2016. I was so excited to find out there was a surgery. I started having numbness and pain in my left leg and foot in 2015. Then starting in right foot. I thought it was my back so I went to the back institute. Because I have a thinning disc. Anyway injections and 14 weeks of physical therapy I gave up in February 2016. But a coworker recommended a Dr. He did the EMG test and that's when I found out I have Sensory Neuropathy. But the Dr said they don't handle it there. And cried and googled. But that's when I read about the triple nerve decompression surgery. I am thankful for that surgery. But I didn't stop there...

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@wilcy

About to have above nerve blockers inserted in both legs! Neuropathy in both feet! Out patient! Surgeon said they are getting very popular! Anyone have luck with them?

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Hi @wiley -- There is another discussion started by @summer15 that discusses the StimRouter. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion:

> Groups > Neuropathy > Sensory Peripheral Neuropathy
-- https://connect.mayoclinic.org/discussion/sensenory-peripheral-neuropathy/

REPLY

About to have above nerve blockers inserted in both legs! Neuropathy in both feet! Out patient! Surgeon said they are getting very popular! Anyone have luck with them?

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@wilcy

About to have above nerve blockers inserted in both legs! Neuropathy in both feet! Out patient! Surgeon said they are getting very popular! Anyone have luck with them?

Jump to this post

Hi, @wilcy - just wanted to let you know that like @johnbishop mentioned, I moved your post here to this existing discussion about sensory peripheral neuropathy so that others could interact with you about the potential of nerve blockers inserted in both legs.

Hoping that @summer15 will return to talk about this topic, and I'd also like to invite @jasont @lorirenee1 @grandmar @qball2019 @vwindsor62 @jenniferhunter into this conversation to offer any insights they may have about surgery to insert nerve blockers. Perhaps they can share whether they have had this therapy or looked into it.

From what the surgeon told you and anything you've read thus far, wilcy, are you leaning toward or against this surgery?

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@wilcy….I actually never heard of nerve blocks in the legs. If you would, please tell me about them. I think I talked to you about Scrambler therapy. I have been doing it again, for 5 days now. He changed me to a sitting position, and I think this blocks pain signals better. Too soon to see, but the last 2 days, I have been pain free, which for me, is incredible. I have also been investigating the Nevro Spinal Stimulator. The thought of more surgery just is ungodly to me. I will see. This neuropathy just sucks. Horrid illness. Lori Renee

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@wilcy

About to have above nerve blockers inserted in both legs! Neuropathy in both feet! Out patient! Surgeon said they are getting very popular! Anyone have luck with them?

Jump to this post

@wilcy My mom had epidural injections in her lower spine that helped her neuropathy in her feet. She used to say it felt like she had hot pokers on her feet. I took her for about 3 of those spinal injections and they did help her pain, and she also had prescription meds in addition. That was a few years back. She hasn't needed them since then and she wears shoes for diabetics that are easier on her feet, and uses a wheelchair instead of standing on painful feet. I think patients are not supposed to do more than 3 of these injections per year.

I had a cervical epidural spine injection as a diagnostic test for my spine problem (prior to coming to Mayo) which was cervical stenosis with spinal cord compression. The doctor wanted to know if my pain would go away from this injection, and it did for 5 days, and then symptoms began returning. The steroid injected, eased some inflammation and the pain for a short time. I did have a paraesthesa caused by the injection that was horrible. It gave me a new pain that went into my index finger of my dominant hand as a stabbing burning electric pain that continued for weeks. If I moved at all, it stabbed me, and I just had to lay in bed and try not to move. If I touched my hand or finger, I got electric shocks and I could trace the entire path of the nerve by doing that. I had cold sensitivity in that hand for over a year and a half, so no thank you... I won't do that again. I already had spinal cord compression, and the injected fluid added pressure because it had no where to go.

I think issues can come up with anything that takes up space and puts pressure on nerves and nerve roots, so that should be a consideration in the decision to do this type of injection, and it is worth asking the doctor if there will be a potential problem because of something physical that may have already narrowed down the space where the injection will be. Some patients do benefit from this, but for me the only solution was surgery to fix the problem. This pain was bad enough after the epidural injection that I was shaking uncontrollably right afterward and nearly passed out, and it was the highest level of pain I ever felt in my life, way more pain than going through spine surgery, and it reset my pain scale numbers. It was only by doing deep breathing and visualization of something pleasant that I was able to keep from loosing consciousness because I had been practicing relaxation with deep breathing and music, and I replayed in my mind what I had been doing, and I also pressed on a relaxation pressure point in my wrist that my physical therapist told me about. As awful as this was, it has value for me because when I compare anything else to that, it isn't as bad, and I had proved to myself that I could tolerate pain and not let it control me. I think that really is the story; we can fear pain and it controls us as it had done to me for many years, or we can understand the pain, and do what we can emotionally and with our minds to control it and take away its power. I do know that fear increases pain a lot, and getting past the fear reduced pain for me.

I was able to tolerate my post spine surgery pain without pain medicine. I just relaxed and rested a lot. I had only temporary relief of pre-existing pain from the injection, and not enough to benefit. The stenosis was getting worse and I had surgery at Mayo that resolved all the spine related pain that I had everywhere in my body.

If you are getting injections in the spine, there are some serious risks that need to be considered, and a misplaced injection can cause damage. Ask the doctors to explain all the risks and statistics, and how successful their procedures are, and you'll need to decide if you want to proceed. Here are a few links about complications. I hope this answers your question, as I'm not sure where your injection would be, and I don't know if this is a true comparison.

https://rapm.bmj.com/content/21/2/149.abstract
https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1399-6576.1994.tb03988.x

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@jenniferhunter

@wilcy My mom had epidural injections in her lower spine that helped her neuropathy in her feet. She used to say it felt like she had hot pokers on her feet. I took her for about 3 of those spinal injections and they did help her pain, and she also had prescription meds in addition. That was a few years back. She hasn't needed them since then and she wears shoes for diabetics that are easier on her feet, and uses a wheelchair instead of standing on painful feet. I think patients are not supposed to do more than 3 of these injections per year.

I had a cervical epidural spine injection as a diagnostic test for my spine problem (prior to coming to Mayo) which was cervical stenosis with spinal cord compression. The doctor wanted to know if my pain would go away from this injection, and it did for 5 days, and then symptoms began returning. The steroid injected, eased some inflammation and the pain for a short time. I did have a paraesthesa caused by the injection that was horrible. It gave me a new pain that went into my index finger of my dominant hand as a stabbing burning electric pain that continued for weeks. If I moved at all, it stabbed me, and I just had to lay in bed and try not to move. If I touched my hand or finger, I got electric shocks and I could trace the entire path of the nerve by doing that. I had cold sensitivity in that hand for over a year and a half, so no thank you... I won't do that again. I already had spinal cord compression, and the injected fluid added pressure because it had no where to go.

I think issues can come up with anything that takes up space and puts pressure on nerves and nerve roots, so that should be a consideration in the decision to do this type of injection, and it is worth asking the doctor if there will be a potential problem because of something physical that may have already narrowed down the space where the injection will be. Some patients do benefit from this, but for me the only solution was surgery to fix the problem. This pain was bad enough after the epidural injection that I was shaking uncontrollably right afterward and nearly passed out, and it was the highest level of pain I ever felt in my life, way more pain than going through spine surgery, and it reset my pain scale numbers. It was only by doing deep breathing and visualization of something pleasant that I was able to keep from loosing consciousness because I had been practicing relaxation with deep breathing and music, and I replayed in my mind what I had been doing, and I also pressed on a relaxation pressure point in my wrist that my physical therapist told me about. As awful as this was, it has value for me because when I compare anything else to that, it isn't as bad, and I had proved to myself that I could tolerate pain and not let it control me. I think that really is the story; we can fear pain and it controls us as it had done to me for many years, or we can understand the pain, and do what we can emotionally and with our minds to control it and take away its power. I do know that fear increases pain a lot, and getting past the fear reduced pain for me.

I was able to tolerate my post spine surgery pain without pain medicine. I just relaxed and rested a lot. I had only temporary relief of pre-existing pain from the injection, and not enough to benefit. The stenosis was getting worse and I had surgery at Mayo that resolved all the spine related pain that I had everywhere in my body.

If you are getting injections in the spine, there are some serious risks that need to be considered, and a misplaced injection can cause damage. Ask the doctors to explain all the risks and statistics, and how successful their procedures are, and you'll need to decide if you want to proceed. Here are a few links about complications. I hope this answers your question, as I'm not sure where your injection would be, and I don't know if this is a true comparison.

https://rapm.bmj.com/content/21/2/149.abstract
https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1399-6576.1994.tb03988.x

Jump to this post

Hi.
My name is Mitch and I just want to say that you have a great strategy in dealing with your pain. Visualization, going to a happy place, all those suggestions are great ideas to help cope with your pain. I commend your efforts and how you are dealing with your own pain issues. Thanks also fir emphasizing the need to be cautious in getting another epidural or any spinal injection as they all have their own risks.
Thanks for the links in risks and consideration of having this procedure

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