One of my worst symptoms is severe burning pain and tightness mostly in traps and back of neck.
I’ve taken hydrocodone for almost five years and what I’m given doesn’t help anymore.
I’ve done PIT, prolo, stem cells, been fused because I thought it might be due to instability. Had tethered cord release. Nothing has helped. Had bilateral styloidectomy 8 days ago. Wondering if I don’t have Dystonia of some sort.
Is there anything you guys could recommend for pain relief? Pain causes anxiety and it is horrific right now. I’ve tried gabapentin, Effexor, nortryltine, Celebrex, steroid packs, cymbalta. What is wrong with me you guys?! I’m so scared that I’m going to be bedbound with pain soon.
Did you have this pain before surgery as well as after? And if before, for how long?
Can you parse out where the neck pain is? What level and on both sides?
The spinal accessory nerve goes to the traps. The traps attach to the bottom of the skull and the greater occipital nerve comes through the top of the upper trap. Could it be that both the spinal accessory nerve and the (or one of the) occipital nerves is causing your symptoms?
Do you have a local Physiatrist (Physical Medicine and Rehabilitation doctor) who can assist?
I would look into botox of the traps to get them to settle while you are healing. And maybe more immediately try Baclofen or Flexeril to get some relief, and check in about Gabapentin (try it again) for nerve pain (thinking occipital nerve pain (?)).
“Occipital neuralgic pain from irritation of the Third Occipital Nerve is a common presentation of referred pain from wear-and-tear of the spine at the top of the neck. The symptoms include neck pain with painful movements of the neck, which not only are lessened and accompanied by crunching noises, but also refer pain into the back of the neck and sometimes as far forward as the eyes. Muscle spasm of the Trapezius Muscle is often seen. It is a natural reaction to the wear and tear of the bone frame of the spine. When this happens, the small nerves that will feed into the Occipital nerve will have some pressure around them that will translate into pain. These symptoms often affect both sides of the neck/head.”
I had this (upper trap spasm and crazy sensitive/painful upper back of neck) when I first ‘met’ my styloid. I wish I could remember how long it took for my traps to settle … but it wasn’t a terribly long time. I had pain at the top of my neck that also settled (mostly). I used lidocaine patches cut in half long ways on the back of my neck. I’m 5.5 weeks out from one sided surgery and my left sided tightness is loosening. I’m just now able to start moving my neck/shoulder and start to stretch out.
To be clear, when I said ‘I had this’… I was referring to the trap spasm and upper neck pain. It was not identified as occipital neuralgia. At that point I was only focused on the styloid and getting all that figured out. I still have some upper neck pain that I’ll pursue if it doesn’t fully settle.
One or two other thoughts actually… I’m assuming you’re taking a hefty dose of magnesium daily. And if you’re not that just needs to be part of routine to help those muscles relax. 500 to 600 mg up to 800 is what was prescribed for migraine. And I use magnesium citrate as it’s more bio available.
The other thought is if you haven’t tried the thermacare hot patches. You could put those on your traps, away from your scars… And also see if you get some relief from those traps, relaxing.
Then, if you put lidocaine on your upper spine. That might be a good at least nighttime solution. The lidocaine is not supposed to get hot. So no heating pad and no hot patches near the lidocaine patch. I need to use paper tape with the lidocaine. Otherwise, it is a pain in the rear to get off and I’ve pulled out gobs of hair already…
So I had this before surgery but surgery has ramped it up substantially. Worse before you get better? I’m hoping. Massage flares me. I take baclofen every four hours regularly.
I’d beware of taking that much mag citrate. It’s also a powerful laxative. Mag glycinate is also very bioavailable but doesn’t have the laxative side-effect.
Yes, my nerve issues ramped up after surgery and has been settling. I hope that since you had it prior and it got worse after surgery would indicate the surgery trauma and swelling has caused pressure on nerves and they will also settle. I can’t recall if you’ve been able to try a steroid pack. They cause me sleep issues, so I will take weighing the sleep/benefit.
I suspect for those of us (many/most) who have other cervical issues, this is so very challenging as at least for me, there was a constant guessing of what is wrong and am I doing the right thing. I found that this condition being so rarely treated or known, left me in the dark (besides this group and my own research) regarding what was what. And that alone produced a gob of anxiety. I’m so sorry you’ve gone through so much, but am hopeful you are going to see some relief in the near future.
! Thank you for all your responses!