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.

@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/

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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

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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.

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@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.

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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/

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@mlross4508

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

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@mlross4508 Thanks, Mitch! I had a choice to make and the stakes were very high. I have worked so hard to develop my artistic skills which takes many years. Because of my spine problem, I was already loosing the ability to hold my arms up and control my movement, and everything else like driving or pushing a shopping cart was painful and exhausting. I was on my way to loosing what I cherished most if I was to permanently loose my ability to paint, and I was lucky that I had a choice and a chance to change my future, and found a gifted surgeon who wanted to help me. I guess I'm also lucky that none of the others would help me because I might have ended up with hardware that I didn't want. I was able to have a single level fusion with only a bone graft, and I stayed in a neck brace until it fused. Most doctors probably wouldn't agree to that, but my surgeon trusted me, and I don't have to worry about complications. In my hindsight, I would have come to Mayo first, and I probably would not have lost so much muscle mass to atrophy.

Color by numbers or anything else that gets you engaged in creating helps, so go for it! We have an Art for Healing discussion and we talk about that, and you're welcome. See the link below. (There are posts about my surgeon and his portrait on the first page.) Photography can also work like that and it's something I do to inspire future paintings. Art has always helped with healing and comfort, and Mayo has a lot of art in the patient areas. I was in a unique position of being able to direct my own therapy and healing with my artwork. 4 back surgeries is a lot. You might be interested in looking at the discussion on Myofascial Release which can help break up surgical scar tissue. I've done this for several years and also in recovery from my spine surgery. My incision area gets tight, and I stretch it out again. I think MFR contributed to the success of my spine surgery because it kept the muscles supple and easier to retract during surgery. Maybe it can help you.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://connect.mayoclinic.org/discussion/art-for-healing/

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Several years…

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