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I have had pain behind my ear causing headaches on the right side of my head, on to my ear and sometimes down to my neck. I have done some research and it sounds like Occipital Neuropathy. I have AS fused neck and MANY bone spurs.
Answer Summary
Members deeply connected over the challenge of occipital neuropathy pain stemming from cervical spine issues, sharing stories of intense pain... Read more
@A MySpondylitisTeam Member. Here's the one i received a year ago from my latest Ortho Spine surgeon, (move over Christi Brinkley😄)!
Getting it from the dr may mean insurance will cover the cost. I dont think it's particularly expensive though. It's in 2 parts that hook with velcro straps. Pads are removable and washable. The knob in the middle is the traction adjustment. It's not nearly as uncomfortable as it looks. It's the one they use for surgery patients these days, something im avoiding like the plague.
Vicki, most people think that a really bad off spine cannot heal, or even improve, without surgery. However, that is not typically the case so long as it has not already fused (either naturally from fully developed AS or by surgeries). My own C2-T2 reverse curve has straightened to some extent just from daily GENTLE stretching and physical therapy exercises over the past 10 years to retrain and strengthen all the supporting muscles in the front of neck to chest, upper shoulders, and scapula/rhomboids (?) around the upper back and spine area. The idea is to train the shoulders to stay down, not hunch up, back and open, not rolled forward. This helps take the load off the neck. You also want to be vigilantly mindful about kerping your chin up so as not to allow your ears to move forward in front of your shoulders, especially while looking at computer screen and phone. A Dr of PT working on me several years ago told me that for every inch your ears are in front of your shoulders it is 60 pounds of pressure on your c-spine. That means that when you're leaning over to pick something up off the floor, about 4 inches or more, over 200 pounds of pressure are on your neck. Most people have no idea about this. I believe i recall reading somewhere that 80% of people over the age of 40 have neck pain. It's not just a problem with spondy's, most of which I've noticed here don't even have true Ankylosing (self fusion) and likely never will, they've just fallen prey to a diagnosis hunt with no plan to avoid what may or may not come. Good for you to take matters proactively into your own hands. As long as you have breath, theres always something you can do to improve your circumstances. Yours in better health, P 😌🙏
@A MySpondylitisTeam Member I was thinking earlier today about getting a neck brace, I have a collar but gives me headaches. I need something like what you are talking about. Thank you for your kind words and prayers! 👍 I will keep pressing onward and upward by the GRACE OF GOD!
@A MySpondylitisTeam Member/ @A MySpondylitisTeam Member Thank you for your input! Actually, two nights ago, before reading your posts, I figured out that if I lean my neck back, it alleviated some of the pain behind my ear. That is when I realized that I had been allowing my neck to drop down and it was pinching the nerve. So, I have been practicing holding me neck back (which is not easy) and doing a lot of exercising my neck and shoulders. You, two have just confirmed what I was thinking. Thank you again and God Bless!😊
@A MySpondylitisTeam Member, Pitac's answer may seem overwhelming to some. Posture from balanced muscle tone remains foundational for us. It is the best place to start the day and end the day.
One other option is the ablation of the Occipital/Sub-Occipital nerves. The use of injected Prednisone and Lidicaine directly to these nerves (it does the same thing yet only lasts for 1 to 3 days) has helped identify this same issue for me. I recommend the ablation procedure only after the option defined by @A MySpondylitisTeam Member no longer works. The nerves will heal every six months or so, requiring repetition of procedure. Overtime, these nerves that control the back of the ear and back of the skull muscle tissue will take longer to recover. I do recommend physical exercises for good spine alignment as the foundation of our well being. Any other surgical procedures is a last resort.
I'm just nearing the end of back to back illnesses that interrupted my daily physical routines. The muscle loss is noticeable, yet, recoverable. As I get older, I'm having fewer days of recovery time between flares. Yet, I continue to refine the triggers and find improvement for some symptoms, and find ways to maintain muscles and flexibility. It is a hard fight and I could not continue without knowing that others also go through this journey, with some finding profoundly good ways to adapt, like Pitac. Most people here are amazing.
I'm most grateful for the days that I can walk again at 3 to 4mph. Even though they might be days or weeks apart. My scooter hasn't been used in months and collects dust.
Thank you for sharing this important question.
Please share what helps you.
@A MySpondylitisTeam Member. I did go through this deveral years ago for a couple of years. It first felt like a deep inner ear infection. Every time i went to any type of dr with an ear light I'd ask them to check for redness. Nothing. Over time the pain spread down my jaw, neck, even to shoulder sometimes, and also to temple, face, entire right side of my head. I consulted 2 EENT drs, a maxillofacial surgeon, otolaryngologist, neurologist, 2 neuro surgeons, Rheumatologist had a CT. MRI, and ended up finding a DOCTOR of physical therapy who finally fixed it for me.
Diagnoses and recommendations were as follows:
1 ENT diagnosed migraines and recommended Topamax (😬🤢). 1 ENT diagnosed extreme deviated septum causing overcompensating and recommended rhinoplastic surgery😱. The Otolaryngologist diagnosed organic essential tremor and recommended Neurologist. Neurologist did about 18 months of testing for MS, ALS, MD, Parkinson's, MG, a few others and ended with migraines and Spondylitis confirmed. Neurosurgeons confirmed a real $#itshow of my entire cervical spine with loads of osteophytes and stenosis all over the place and both recommended C2-7 ACDF. 😱😫🫣. The Maxillofacial suspected night teeth grinding and custom fit a mouth guard for night along with botox injections into the skyll muscles in the area to relax them, sometimes that helped. The mouth guard did not. Eventually i got a referral to a phenomenal DrPT who hands on released the fascia tissues and showed me proper posture, taught me several exercises to retrain and strengthen weak areas of my neck and face. After 6 months, problem solved. That was about 7 or 8 years ago and i do everything learned at PT a minimum of 5 days a week, sometimes twice a day. No meds. No surgeries.
I posted my latest cervical spine MRI report last year if you think it will be helpful to know if the least invasive non medicated approach will help you too. Look under the updates tab and scroll to last summer sometime.
It can be super scary indeed. I was walking like a hammered drunk person, greatful to have modern tech in my car to keep me in my lane, seeing double and blurry, the TMJ got so bad it hurt to speak let alone eat anything, trigeminal neuralgia, trouble speaking, urinary incontinence. The cause was/is related to stenosis of the foraminal nerves exiting one of the mid to lower vertebra, C4-C7, don't recall offhand which.
My message to you is this, you dont need to do anything more drastic than commit daily to cognitive awareness of how you hold your head over your shoulders at all times, how you use your arm on that side, pillow posture, stress, and physical therapy every day. Surgery wont help if you dont correct behavior. Medication will leave you even more off balance. Read my neck journey on my wall updates. Reach out anytime for more details. Yours in better health, P😌🙏
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