Living with Neuropathy - Welcome to the group

@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/

@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

We don’t have thunderstorm’s in San Diego but I hope you don’t get to many where you live !!

Thank you so much ! I will check into that . I added Reiki once a week and it super relaxes me . I just got back from a trip to LA where I had to work long hours but can rest now I see a neurosurgeon this week and had all new MRI they wanted to give me a steroid shot and I said no . I have had a few Pilate’s lessons but only do legs . I am a C5-C6 artificial mobi c disc replacement .

@dancermurphy, Just wanted to let you know that there is an expert level Myofascial Release (MFR) Therapist in San Diego on Santo Road. A session might be helpful and also help you with your fears. You will learn a lot about how your neuropathy can be managed. If you want the address I can give it to you or you can just look on the map for Adjust Physical Therapy. Good luck with your test results.

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

@dancermurphy, Just wanted to let you know that there is an expert level Myofascial Release (MFR) Therapist in San Diego on Santo Road. A session might be helpful and also help you with your fears. You will learn a lot about how your neuropathy can be managed. If you want the address I can give it to you or you can just look on the map for Adjust Physical Therapy. Good luck with your test results.

@lauraj155, @dancermurphy I am happy to give you the information. Brian McDonald, Adjust Physical Therapy, 858 715-3878. He is at the expert level for myofascial release therapy (MFR). It's a feel-good place.