Living with Neuropathy - Welcome to the group

Hello @cordy, welcome to Mayo Clinic Connect. I'm sure the back surgery outcome is not what you expected or hoped for from trying to repair a bad back and ending up with other severe health conditions. I have no experience that I can share but I'm tagging other members @jenniferhunter and @lioness to see if they may have any suggestions or information for you.

Are you on any medications for the new symptoms?

Thank you so much. No pain as yet just numbness. He had nerve tests yesterday .

@cordy I wanted to say hello, and that I'm sorry you have these troubles. My mom has a foot brace that she got after surgery to lengthen tendons in her feet and ankles so she could walk again. Her foot had twisted after a break from a fall, so that is how this all started for her. The brace hasn't been a problem, but she just doesn't like it, so she opted to just use a wheelchair. She has had blood clots in her leg because of being more sedentary, and now she takes Eloquis for that, but she is doing well. That's something to watch for. If you get one leg that gets bigger, call your doctor.

I am a spine surgery patient, and I had drop foot intermittently because of cervical stenosis. I also have a bulging disc in lumbar, but it was when my C spine was out of alignment due to muscle spasms when I had no space around the spinal cord that it happened to me. If my pelvis shifts out of its alignment, I can also get weakness and sciatic pain, but realigning in physical therapy helps. I had flexibility of the SI joints, and when they let my pelvis shift because of tight muscles, that caused leg pain. I do think you need another surgical opinion for sure and some new imaging like an MRI to determine if any hardware is displaced from your back surgery or if there are any dislocations or fractures. I have heard of other patients having a fracture in the spine happen after spine surgery. That would be a question to ask, and could only be answered by new imaging studies.

Having surgery creates internal scar tissue, and sometimes it is the scar tissue that causes problems. My physical therapist has treated my scar tissue with myofascial release. This is slow gentle stretching of the fascia layers until it releases. Cutting the fascia with surgery creates scar tissue in it like a knot. The fascia is that cobwebby stuff you have seen. It connects everything in your body. It also holds everything in the wrong alignment if it is too tight, and that can cause pain and nerve compression. I have that problem with thoracic outlet syndrome that causes nerve compression in my neck and shoulder. My physical therapy for that has been MFR work for a few years, but with an interruption of the spine issues and my surgery, but I continue with therapy. See myofascialrelease.com for information. There is also a list of trained therapists on the website. If you don't find any near you, you can call Therapy on the Rocks in Sedona, Az and ask for people who trained there. I have made great progress with this and it helps me move properly and with better alignment and body mechanics.

Have you tried water therapy or swimming? I used to teach a swim class for disabled adults and a woman who had MS could walk in the pool and she said it helped her a lot. That might be hard if you are in pain, but if you don't use muscles they can atrophy, and that also happens when the nerve supply to a muscle is compromised. The water will support your body weight. I lost about half the muscle in my arms and shoulders because of spinal cord compression, but it is coming back now slowly and I am 2 years past my surgery. One of the things my physical therapist did to block pain was use a Dolphin Neurostimulator on the nerve roots in my spine (neck). It sends an electric current and reacts to an area of inflammation which blocks the neurotransmitters for the pain signals. Nerve cells send electric signals in the space between them with these chemical neurotransmitters, and if you block that, you can reduce pain. I don't know if that helps severe pain, but it did help me when I was trying unsuccessfully to find a surgeon to help me. 5 refused over 2 years, so I came to Mayo and was so glad I did. The surgeon who operated on me at Mayo is a deformity expert and both neurosurgeon and orthopedic.

Sometimes, just believing something is possible can empower a patient to achieve a better outcome. I think it is a good sign that you can walk. Get as many opinions as you need. You will need to advocate for yourself. It seems now, doctors are not looking to fix this, but instead, help you cope with it. Surgeons don't want poor outcomes with their patients and poor ratings, and they might turn you down rather than risk that surgery could make you worse, and that is where you are now. That might make it hard to find a surgeon willing to help. That is a hard place to be. All 5 surgeons who saw me misunderstood my symptoms and couldn't connect it to my imaging. One even suggested I could have something like MS that was causing pain all over my body. He didn't listen when I explained how my pain could turn on and off with the direction I turned my head and I had a ruptured disc and bone spurs compressing the spinal cord, and I was changing the pressure and position of that against the spinal cord. I had tracked my symptoms on a map of the body and saw how they progressed over time as the bone spurs enlarged. I was able to find medical literature with cases like mine, and I knew surgery would help me and take away all my pain, which is what happened. If you can travel, you might want to consider Mayo for an opinion. They are known for helping patients that are refused elsewhere and taking difficult cases. You can always look into it just in case. I was always looking for the next surgeon or my "Plan B" just in case things didn't work out, and it was surgeon #6 who changed my life.

In January, the Sharing Mayo Clinic blog will have my story as a spine surgery patient, but I would like to share this story about my surgeon with you.
https://sharing.mayoclinic.org/2017/07/26/spinal-surgery-saves-teen-swimmers-mobility/

@cordy Welcome and thank you John for asking me to chime in Cordy I have a fractured L2 refused surgery but I can move and the pain is doable with what helps me Ice is an anti inflammatory as well as Golden Milk as @fresh air talked about Back to my neuropathy it's not in my feet but in my thighs as the nerves that go into my legs are affected by my fracture so I have nerve pain and numbness at times .I do naturel stuff like I use a Tens unit on the outside of the body not internal as Jennifer explained I use heat after the ice as heat is bringing blood to the service 15 minutes each ice first .A friend had neuropathy in her feet she said the feet exercises help stretching them Dr had me on Gabapentin but it affected my mental state

I am very curious about the gabapentin. I take it for crps and have a nerve stimulator which at the moment has failed to work. No problem however with gabapentin or other meds.

@carolyn37 Everyone is different for me it wasn't helpful but it may for you ,ask your Dr.

@carolyn37 I've been on various doses of Gabapentin for the past two years, and cannot say that it helps in any way, certainly not for pain. And I really don't like the way it interferes with my mental process.

We're all different, aren't we ... gabapentin helped me, calmed my nervous system so it didn't cause so much pain, but as my nervous system continued dying I got to the limit of how much gabapentin my doctor would prescribe so he sent me to a neurologist who prefers Lyrica. The first day, it made me sleepy but it doesn't any more. I'm taking 150 milligrams twice a day but it's not working as well as gabapentin did. I took Lyrica CR for 3 months but my insurance company won't pay for it any more. It didn't work as well as gabapentin either. I will see my neurologist as soon as I can and ask what to do. Peggy

I hope they find a med for you that will really help

Hi carolyn, gabapenton did not work for my neuropothy but lyrica lessons the intense burning sensation. Cannibus cream did nothing. Also riding a stationary bike hard for 20 minutes really helps, im guessing it could be blood flow. Rob