Spinal Fusion issues

@jenniferhunter, I had a cervical acdf spinal fusion in May of 2020 c5-c6 really nothing has changed for the better, started getting same symptoms and more worse started a couple years ago, now my neck stays sore and stiff all the time, can't turn my neck have to turn my body to look at anything, get lightheaded out of nowhere ears ring 24/7, still have problems swallowing even pills, my arms and hands go from burning with needle prick feeling to cold, the back of my shoulders hurt and burns, had MRI of my head and brain came back normal, nuclear stress test with images came back normal, nerve conduction study with shock shows mild carpel tunnel, ulnar never compression on left side which I had surgery on that on July 1 2020, and multiple pinched nerves in neck, seen ENT for last 3 years and he can't find anything that is causing all this and tells me it's all coming from my neck, cervical MRI shows to much to remember but my neurologist tells me everything is fine sent me in for nerve injection that made things worse and now wants me to try spinal cord stimulator that I will not do from my research and talking with others, had l5/s1 fusion January of 2021 that resulted in permanent nerve damage from my knee to my toes on right side and all my problems were back, buttocks, groin and left leg not the right, I feel I'm being used as a lab rat

@borders74 Welcome to Connect. What you're describing of not being able to turn your head, lightheadedness, pain in arms and shoulders sounds like symptoms from thoracic outlet syndrome. I see that you did have ulnar nerve compression, and TOS also compresses the ulnar nerve in a different location perhaps where it passes through scalene muscles at the side of the neck or between the collar bone and rib cage in the upper chest. There is also scar tissue from surgeries that can make things tight.

You might want to consider myofascial release which is physical therapy by a specially trained therapist that will stretch out scar tissue, release tight fascia, and get your body moving better again. A lot of doctors don't think about fascia getting stuck and these are not problems that would show up on imaging. I have done a lot of this MFR work, and I do have TOS in addition to a C5/C6 spinal fusion. You should be able to turn your head if that is the only fused level. It sounds like you have muscular spasms or restrictions or perhaps scar tissue interfering.

Here is a discussion where you can learn mote.

Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
The nice thing about MFR is it's just PT, and not surgery. It doesn't cause pain unless something is really stuck and it is gentle.

Have you heard of MFR before?

@borders74 Sorry you are still going through so much. I feel for you there. Your symptoms are almost spot on to mine since a C5/C6 fusion 3 years ago. Still trying to figure out whats going on. It is definitely going down hill and seems like there is no hope for a fast fix. Knowing other people are going through similar issues makes me feel like we will get it figured out eventually. Let me know if you notice any improvement and I will let you know of anything of mine gets better.

@jenniferhunter I have not heard of MFR, done pt 3 times in the past and it really didn't do anything is this completely different pt, I had ulnar never transposition where they moved the nerve around my elbow to a different position

@jenniferhunter, I had a cervical acdf spinal fusion in May of 2020 c5-c6 really nothing has changed for the better, started getting same symptoms and more worse started a couple years ago, now my neck stays sore and stiff all the time, can't turn my neck have to turn my body to look at anything, get lightheaded out of nowhere ears ring 24/7, still have problems swallowing even pills, my arms and hands go from burning with needle prick feeling to cold, the back of my shoulders hurt and burns, had MRI of my head and brain came back normal, nuclear stress test with images came back normal, nerve conduction study with shock shows mild carpel tunnel, ulnar never compression on left side which I had surgery on that on July 1 2020, and multiple pinched nerves in neck, seen ENT for last 3 years and he can't find anything that is causing all this and tells me it's all coming from my neck, cervical MRI shows to much to remember but my neurologist tells me everything is fine sent me in for nerve injection that made things worse and now wants me to try spinal cord stimulator that I will not do from my research and talking with others, had l5/s1 fusion January of 2021 that resulted in permanent nerve damage from my knee to my toes on right side and all my problems were back, buttocks, groin and left leg not the right, I feel I'm being used as a lab rat

@livininthestix after talking with someone on here and doing a lot of research I'm going to talk to my doctor about TOS, everything I have read about it is exactly what I'm experiencing even with the ringing of my ears so I will be talking with him

@borders74 Have you doctors tested you for Thoracic Outlet Syndrome? I have TOS and have had similar symptoms to you. TOS specialists are few and far between and most doctors don’t understand it.

@borders74 I am a masssge therapist and am now working with a pelvic floor specialist PT who also provides myofacial work. post spine fusion about 8 months and pain when sitting that presents as hip pain . My pelvic floor and abdominal are too tight. It took awhile to find this therapist but I feel we might resolve this issue not that we are moving the facia. I stretch and use balls in between sessions. Ideal if you vc a find a PT that specializes in Myo but it is worth it to go to a massage therapist. Trick is, most do not accept insurance.

@sassytwo it's crazy learning about this and everything I read fits all my symptoms not saying that's what it is I'm not doctor but I've been telling them everything for going on 6 years, times my upper ribs hurt hurt pretty bad like now, I can't do anything over head with my arms not hurting, burning and tingling and get so weak to the point I have to stop even if it's screwing I screw in , times when I hold the grand babies my shoulders and arms get really weak like I can't feel them anymore, my neck, shoulders, arms everything hurts, burns, tingles, like I said rib pain almost daily, my hands get cold and I don't know what else to tell them. I'm 51 years old and they keep telling me all my test are not showing with what I say

@jenniferhunter I'm looking for one near me, I live in southeast Missouri and so far the nearest one is in St. Louis a 3 hr drive and that's where I had all of my surgeries at but a different location