Hello @kansasgal, welcome to Mayo Clinic Connect. I'm sorry you have to deal with so much pain. There is another discussion here on Connect where your post may have more visibility. I'm tagging our moderator @lisalucier to see if we can move your post to the following discussion where you can meet other members dealing with peripheral neuropathy. You might want to read through the discussion while we wait.

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

@kansasgal did you receive any help from the Pain Management Clinic? Are you able to share a little more about the pain you have and your neuropathy diagnosis?

John

@kansasgal I was hoping I could share some experience I have with my mom's issues. My mom broke her pelvis, ankle, and foot when she fell at home, and those injuries caused her tendons to shorten into the same position her foot would be in if you both pointed the toes and twisted the ankle. Muscles work in groups in opposition each other and are attached to move bones like levers, so if the bone breaks, one of those muscles can overpower by pulling the bone out of alignment. If you have a weak muscle (possibly from nerve compression), the opposing muscle takes over. That might recruit other muscles to try to help, and this causes overworking and spasms and pain and it doesn't function normally any more.

My mom is elderly and spent 3 months in a rehab center and walking was painful and difficult after the bones healed. She had physical therapy after that, but didn't walk much because of pain, and her foot then twisted into the position. He had deformed feet also because of the big toes turning outward. We got several opinions because pain was preventing walking and making it difficult to transfer between sitting to standing, etc. One opinion was to fuse her ankle bones so she could hobble for a walk. One opinion was to cut ligaments in her foot. The third was surgery to lengthen her Achilles tendon which is what she chose. The surgeon also moved a few muscles from the side of her foot to attach near the top of her feet near the big toe. She spent 7 weeks in a cast. After this, she was fitted for a brace on the lower leg, but she doesn't want to wear it, and she uses a wheel chair for fall prevention since she has poor balance. It is still painful for her to stand on her feet, so we got diabetic shoes from her podiatrist that have special padding and she can stand in them.

These problems were caused by the injury from the fall and I saw similar problems in my dad after he broke his hip. The injury causes a shortening of tendons and muscles and everything gets locked into the wrong place so normal movement and function isn't possible any more. From your description, it sounds like you have shortening too because a proposed surgery was to lengthen the Achilles tendon.

Have you tried physical therapy? What I would really suggest, is a physical therapist who is also an expert in myofascial release. I took both my parents to my physical therapist who does this and it helped. This would be something you could do to try to avoid surgery. After things are functioning better, then strengthening can help hold the changes. I recommend MFR a lot and here are some things to look at. If at some point you do need surgery, this MFR can make that surgery more successful because things would function better, and it can relieve a lot of pain. I have lots of experience with MFR, and my PT has explained how to do it, so I also self treat at home. I have nerve entrapment from thoracic outlet syndrome (in neck/shoulder) and had a ruptured disc in my neck with spinal cord compression for which I had surgery at Mayo and had a great recovery. If you watch the video, John Barnes explains how issues with pelvic alignment can cause issues in the legs. He developed this type of therapy to release tight tissue and get it functioning normally again and you can have problems like this all over the body. The website has a list of therapists, and you can also call Therapy on the Rocks in Sedona, AZ, and ask for recommendations near you (not all pay to be listed). This is his practice and he has taught this treatment for many years to physical therapists. I hope this give you some new hope for recovery. Let me know if you have any questions. It has done a lot for me.
In case you are interested, here is my Mayo story. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
Jennifer

Here is some information-
Myofascial Release

Problems that MFR therapy can help
https://myofascialrelease.com/about/problems-mfr-helps.aspx
Benefits of Massage-Myofascial Release Therapy on Pain, Anxiety, Quality of Sleep, Depression, and Quality of Life in Patients with Fibromyalgia
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3018656/
Therapeutic Insight: The Myofascial Release Perspective—Depression John Barnes
https://www.massagemag.com/therapeutic-insight-the-myofascial-release-perspectivedepression-8584/
Use Fascia as a Lever John Barnes
https://myofascialrelease.com/downloads/articles/FasciaAsALever.pdf
Therapeutic Insight: The Myofascial Release Perspective—Sympathetic and Parasympathetic Shock
https://www.massagemag.com/therapeutic-insight-the-myofascial-release-perspectivesympathetic-and-parasympathetic-shock-7709/
Lumbo Sacral Decompression video with John Barnes