Sensory Peripheral Neuropathy

Posted by summer15 @summer15, Mon, Jul 8 12:46am

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.

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

REPLY

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?

REPLY
@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

Jump to this post

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.

REPLY
@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?

Jump to this post

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…

REPLY
@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 @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?

REPLY
@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?

REPLY

@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

REPLY
@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

REPLY
@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

REPLY
@lisalucier

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?

Jump to this post

Hello All. I do have the Stim Router device inserted next to a nerve in my right foot. It was inserted April 3rd of this year. The pain on the top of my right foot was roughly about an 8 with medication. I still have pain but so far it has helped. My pain level in my right foot has decreased to roughly a 6. But that's still with medication. The hope is with time my pain will continue to go down as the nerve gets retrained. The plan is to do the left foot as well.

REPLY
@mlross4508

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

Jump to this post

@mlross4508 Thanks, Mitch. You are welcome. I do think doctors push spinal injections to avoid doing surgery, and they tried to get me to do more injections and I refused. That surgeon later refused to offer surgery to me because he thought I had other issues causing my pain, and that spine surgery wouldn't resolve much of it. He was wrong about that because I had what is called "funicular" or referred pain that sent pain into every part of my body from the spinal cord compression in my neck. It was right after that refusal that I found medical literature with patient cases that were similar to mine in what they called a rare presentation of symptoms, and I knew that neck spine surgery would fix all of that and it did. I did a lot of things to work through my fear of pain and medical procedures and I had a lot of time to think about that. I saw 5 surgeons over two years time, and none would help me, and I contacted a surgeon at Mayo who did help me. My journey was difficult, but overcoming these fears changed my life in many ways, and I know how to work through things like this. That's really why I'm here helping other patients with my experience.

Any time you are considering major surgery, you do need to be cautious and understand all the risks that could specifically apply to you as well as the choices you have, and the benefits that can come from recovery. It's a calculated risk and there are things that patients can do to contribute to success, some of it is taking care of your health, and some of it is believing that you will have a great outcome. By the time I came to Mayo, I had read a lot of spine surgery literature and talked to enough surgeons about it that it helped me evaluate the Mayo surgeon I hired for the job. I could understand my imaging and knew that he was good by the way he answered my questions and explained what I already knew about my spine condition. You have to be proactive and ask questions that will help you evaluate the doctor. I also read his papers and looked up his background, and I asked questions about the surgeon to other doctors I saw as part of my comprehensive evaluation and every one of them said they would trust the surgeon's skill if they were the patient. I didn't feel that way about the previous 5 surgeons, and they didn't seem interested in helping me or answering questions, but they didn't understand my symptoms. I was always nervous meeting a surgeon because of what I was facing and that is when I started my mental games to distract myself from worrying. One of the things I did was to draw sketches of a previous doctor from his web photo and it helped me see him as a real person instead of a doctor. When I met my Mayo surgeon, I wasn't nervous, and I asked him if I could draw sketches of him and he let me take a few photos. While I was waiting for my surgery, if I got scared, I got my sketch book and drew him because I needed to associate him with good things. I had to concentrate a lot to do that and because I only draw or paint things I like, it gave me a way to like him and connect with him, and to think about him as a person outside of his career. Every time I had a surgical consult with the others, it was a test of my ability to cope with the reality of my situation and they gave different advice, and none of them got it right. I needed 6 surgical opinions to find one good opinion and I am so glad I advocated for myself even when I was afraid. Knowledge is power and it helps to make an educated decision, and a patient needs to be ready and confident to make that decision. Here is my story. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

REPLY
@jenniferhunter

@mlross4508 Thanks, Mitch. You are welcome. I do think doctors push spinal injections to avoid doing surgery, and they tried to get me to do more injections and I refused. That surgeon later refused to offer surgery to me because he thought I had other issues causing my pain, and that spine surgery wouldn't resolve much of it. He was wrong about that because I had what is called "funicular" or referred pain that sent pain into every part of my body from the spinal cord compression in my neck. It was right after that refusal that I found medical literature with patient cases that were similar to mine in what they called a rare presentation of symptoms, and I knew that neck spine surgery would fix all of that and it did. I did a lot of things to work through my fear of pain and medical procedures and I had a lot of time to think about that. I saw 5 surgeons over two years time, and none would help me, and I contacted a surgeon at Mayo who did help me. My journey was difficult, but overcoming these fears changed my life in many ways, and I know how to work through things like this. That's really why I'm here helping other patients with my experience.

Any time you are considering major surgery, you do need to be cautious and understand all the risks that could specifically apply to you as well as the choices you have, and the benefits that can come from recovery. It's a calculated risk and there are things that patients can do to contribute to success, some of it is taking care of your health, and some of it is believing that you will have a great outcome. By the time I came to Mayo, I had read a lot of spine surgery literature and talked to enough surgeons about it that it helped me evaluate the Mayo surgeon I hired for the job. I could understand my imaging and knew that he was good by the way he answered my questions and explained what I already knew about my spine condition. You have to be proactive and ask questions that will help you evaluate the doctor. I also read his papers and looked up his background, and I asked questions about the surgeon to other doctors I saw as part of my comprehensive evaluation and every one of them said they would trust the surgeon's skill if they were the patient. I didn't feel that way about the previous 5 surgeons, and they didn't seem interested in helping me or answering questions, but they didn't understand my symptoms. I was always nervous meeting a surgeon because of what I was facing and that is when I started my mental games to distract myself from worrying. One of the things I did was to draw sketches of a previous doctor from his web photo and it helped me see him as a real person instead of a doctor. When I met my Mayo surgeon, I wasn't nervous, and I asked him if I could draw sketches of him and he let me take a few photos. While I was waiting for my surgery, if I got scared, I got my sketch book and drew him because I needed to associate him with good things. I had to concentrate a lot to do that and because I only draw or paint things I like, it gave me a way to like him and connect with him, and to think about him as a person outside of his career. Every time I had a surgical consult with the others, it was a test of my ability to cope with the reality of my situation and they gave different advice, and none of them got it right. I needed 6 surgical opinions to find one good opinion and I am so glad I advocated for myself even when I was afraid. Knowledge is power and it helps to make an educated decision, and a patient needs to be ready and confident to make that decision. Here is my story. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Jump to this post

Jenniferhunter- thx for your insight and perseverance in going through 5 Drs before committing to surgery. It’s scary. I’ve had 4 surgeries, and in hindsight, I wish I had done more research on my condition and look up the medical terms they were using regarding my surgery. I knew in general what they were going to do, but I had no idea of how high the percentage is in failed back surgeries. I count myself as one of those statistics. Too late so I go to this forum for information and emotional support, and understand that I’m not alone, and that there are people in worse shape than I am in. So I am thankful for that. I thank you for your support, encouragement, experience and your story, and an example of a coping mechanism in drawing when you are having a rough time. Very smart. I’d have to resort to color by numbers with my skill level- or lack there of !!
So keep posting and helping us stay positive. Mitch

REPLY

I had pain when I stepped on something little like a cord or a pebble (with out shoes on). I was sent to acupuncture at Mayo 17 which has stopped the pain twitches. I stopped going for a few months because I thought it was gone but it came back. Now if I get a treatment every 4-6 weeks it keeps it at bay.

REPLY
@johnframsted

I had pain when I stepped on something little like a cord or a pebble (with out shoes on). I was sent to acupuncture at Mayo 17 which has stopped the pain twitches. I stopped going for a few months because I thought it was gone but it came back. Now if I get a treatment every 4-6 weeks it keeps it at bay.

Jump to this post

Hello @johnframsted, Welcome to Connect. Thank you for sharing your experience with acupuncture. Have you been diagnosed with sensory peripheral neuropathy?

Here is another discussion you may be interested:

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

REPLY
Please login or register to post a reply.