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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@dancermurphy

My name is Mary . Feb 8th I had neck surgery and 2 weeks later the neuropathy started all over my body I am on neurotin if I take to high a dose I don’t feel it but suffer with short term memory loss , balance and and have a hard time finding the the right words . I am so scared

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Replies to "My name is Mary . Feb 8th I had neck surgery and 2 weeks later the..."

@dancemurphy
Hi Mary!
Welcome to our group! I am in no way in the medical field, so take my advice from where it comes.
First off, don't jump to any conclusions. I assume when you say you had neck surgery, you mean surgery on your cervical spine????

I had cervical surgery one year ago. I admit I did not have any of the symptoms you are explaining. That being said, sometimes after surgery there can be some swelling from the procedure. This can cause the nerves to be irritated and result in temporary neuropathy. As far as balance and memory loss, have you read the insert that came with the Neurotin? Can it be one of the side effects?

In any case, I strongly urge you to call your surgeon and if a phone conference will not work, then insist on an appointment. If you are not happy with the answers, make an appointment with your PCP or neurologist. In the meanwhile, baby yourself as far as your neck is concerned. Do not bend or stretch, do not twist or make sudden movements with your head. Let your surgery heal. The outside can look fine, but it takes months for the internal healing to be 100% healed.

So, take a deep breath and do not panic.

Ronnie (GRANDMAr)

@dancermurphy They symptoms you describe are definitely side affects from the Neurontin. Did you give the higher dose that helps you time to "sink in"? I've found that you need to give some things a few months before some of the side affects go away. Your body needs some time to adjust & process the medication. I have taken Neurontin and now take Lyrica and the side affects are the same.

@dancermurphy I find nelurontin/gabapentin really scary stuff. It may help with pain--although I haven't found that--but the side effects are frightening.

@dancermurphy Goid morning. It might help to tell you that I also experienced those symptoms after starting neurontin. My neurologist modified the time and dosage. The symptoms of grasping for words, feeling fuzzy, and unbalanced, stopped as my body adjusted to the medication and dosage time. Maybe time and an adjustment will help soothe your fears. Be safe and protected today. Chris

@dancermurphy Can you share what type of neck surgery you had? I am a spine surgery patient and had a fusion at C5/C6 and at about the 6 week mark post op, the pain did increase a bit because of scar tissue tightening. I was also in a neck brace for 3 months which makes neck muscles weaker, and I had to work through rehab after I stopped wearing the brace. Physical therapy helped a lot, but I had to wait until that 3 month mark to start until after fusion began because I don't have hardware in my spine and that was frustrating to not be able to stretch to help the pain. After it fused, I was able to rehab and made great progress. My physical therapist also does myofascial release which helps release tightness of scar tissue. I'll post a link to a discussion I started about MFR that has a lot of information. I had a spine fusion with only a bone graft. It might be worth a call to your surgical team to discuss your symptoms. Inflammation increases pain and your inflammation in your body will be higher because it's part of the healing process from the trauma of surgery. They may not be familiar with MFR work. There is a therapist finder link in the MFR discussion. It's worth discussing your prescription too and the side effects you are getting. If you are having spasms in your neck muscles, those can cause balance issues and dizziness if it is moving the upper cervical vertebrae around and affecting the normal curvature of the spine. I have had that happen to me.

Fear also increases pain a lot. As a patient, I learned how to confront my fears, and I was able to recover from my spine surgery without any pain medication. I was a patient who had feared pain all my life, but by working on those fears before my surgery, I was able to get past them, and embrace the surgical help I needed. I just accepted that it was going to hurt for awhile, but that real post surgical pain was not even close to the level of pain I had endured before the surgery because of an epidural spine injection that caused a paraesthesia pain because the volume of fluid that was injected and had no where to go. I was convulsing and starting to pass out after that injection, and I used slow deep breathing to keep calm and try to control the pain. I was able to stop myself from passing out and that was a victory because I took back control, and the pain wasn't causing me to loose consciousness. I just had to be patient and I had a few weeks that were awful with stabbing pains that got worse if I moved at all because of he injection. This injection was done as a diagnostic test before I came to Mayo as a patient, and no one at Mayo asked me to do this. These epidural injections are used to put off surgery, and some patients get temporary relief from them. They are not FDA approved for injection of a steroid into the spine, and they carry some big risks. I refused to do any further epidural injections. That surgeon didn't want to help me anyway, and I came to Mayo.

Now when I think about pain, I compare the experience to that day when the high end my pain scale was reset to that new level, and I realize that it's not as bad as it could be, and I relax. Pain is a normal pain of healing. Pain can also be caused by muscles and tissues that are too tight, and I can do something about that with my physical therapist. So I now think about it as a measure of my progress. I used to fear that the pain would never stop, but now I see it as a challenge that I can overcome. I used art and music to confront my fears and learned to relax in the midst of what I was going through. You can join the discussion on Art for Healing here.

My story
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
Art for Healing
https://connect.mayoclinic.org/discussion/art-for-healing/
Myofascial Release
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/