Unexplained Mystery Symptoms
Hello,
I am interested in visiting the Mayo Clinic due to suffering I have undergone since June of 2024. Every test comes back normal except for C5-C6 area, and the surgeon will not operate on me as he doesn't believe my symptoms can be caused by it. I need help.
Began with pulsating tinnitus, but also tongue burning, left hand and arm pins and needles, and terrible pain throbbing in my head. I'd get twitches under my left eye and stabs throughout my head. My ears hurt so badly and felt full with crackling sounds.
Pain goes up back of head into my head with high sound in tune with my heartbeat. I throb and hurt in my head and feel strange headed due to this awful level of pain and suffering. I'm debilitated.
After numerous MRI's, CTs, ear appointments, the only thing found is disc osteophyte complex (bone spurs) indenting my spinal cord with slight retrolisthesis ( I think that means slipping backwards) at C5-6 with mild to moderate central stenosis . Scans did show disc dessication in all my cervical discs and arthritis. After several epidural steroid injections and still throbbing in head and neck, I was referred to a surgeon who says my trigeminal neuralgia, ear pain, arm tingling, and headache throbbing cannot be caused by C5-C6 and would have to be due to C1-3.
Even two TMJ dentists, who both gave me guards, stated I have some mild arthritis in my discs but nothing bad. However, the second one said I have very tense muscles in jaw and that is because my head hurts and pounds with sound and pressure every single day.
I am going to book with Mayo if they'll take me, as I need to get a quality of life back. If ANYONE out there has had similar symptoms with their C5/6, please reach out. Thank you and many blessings.
Interested in more discussions like this? Go to the Spine Health Support Group.
Connect

I might add that my neck also hurts terribly. The injections do help those some, but not the other issues. I also can't sleep in a bed and haven't done so in over a year.
-
Like -
Helpful -
Hug
1 ReactionHave you been suggested Botox for the trip nerve and the neck and head migraine type pain coming from neck. A neuro migraine specialist might be able to help with head and a pain center for facial nerve botox.
-
Like -
Helpful -
Hug
1 Reaction@bswallace I haven't been able to sleep in a bed for over 10 years, even after undergoing 2 spinal fusion procedures in my neck(C5-C6 and later C7-T1).
-
Like -
Helpful -
Hug
1 ReactionMy wife has had very similar "pains".
Sever headaches / pain down each arm to the hands.
First - they thought - Migraines.
Two plus years of self auto-injectors every month -
AIMOVIG 140 mg/mL
Not much help. Also Steroid injections - no help.
Next month she plans to have a C5-C6 Fusion.
Let us hope and pray that this will "do the trick".
peter-paul