A case history of a decade of misdiagnosed headache pain
Below is a story to illustrate how pervasive mismanagement of cervical instability is when it comes to understanding headaches. Some of the personal information has been changed.
Dear Dr. Hauser, I live with a chronic headache that will not go away. It started back in 2008 when I was rear-ended and suffered severe whiplash. The pain in my neck was the first symptom I experienced and then the headaches came on. The headaches would start at the base of my skull with a burning sensation. Within minutes the pain was more intense on the right side of my neck. I also had sharp pain shoot down my right arm with tingling and numbness in my hand.
The MRI results didn’t show any significant problems that would cause headaches.
After several months of chiropractic treatment, it was decided that I needed an MRI because I was “not getting anywhere.” The MRI results didn’t show any significant problems that would cause headaches.
I suffered from pain for about a year and decided to see a neurosurgeon. After several years of different medication protocols, steroid injections, physical therapy, nerve blocks, and facet blocks, the pain wasn’t getting any better, I was not responding to treatment.
In 2012 (four years into this health challenge) the headache was stubborn, called difficult to treat, and non-responsive to any remedies. It decided not to go away. I wake up every day with a headache and go to bed with a headache. Depending on what I did physically determined how bad the pain would get. When I look up or lift something heavy the pain gets so severe. My doctor then decided to put in a cervical spine stimulator to hopefully help with the pain. In the beginning, it seemed to ease the pain a little. I believe that I was wanting relief so bad that I made myself believe it was helping when it really wasn’t.
I was referred to a pain management doctor and he tried more and different nerve blocks and stronger and more frequent medications with little to no help.
With no other help, the doctor put me on antidepressants. I didn’t know I was addicted to my pain medications until they took me off of them
By now it’s 2014 (six years into this health challenge) and I suffer from severe depression. This wreck from 2008 has changed my life in so many ways and I’m very upset that no one can help me. My husband could see the change in my state of mind and had the doctor put me on antidepressants. I was so mentally and physically exhausted. My doctors agreed to send me to a Headache Clinic in Chicago where I was immediately admitted into their hospital.
I didn’t know I was addicted to my pain medications until they took me off of them. I went through a terrible detox. All I ever wanted was for the headache to stop but I didn’t realize how I was causing rebound headaches. I went years suffering before I started taking painkillers because of that reason. My hospital stays there were two weeks. I attended group meetings with others who also suffer from headaches.
It’s not a migraine, stop telling me it is
I’ve known all along that my headache was not a migraine headache. I’ve never experienced nausea or sensitivity to light. I was in a group of patients where 99% of them suffered from migraines. I had C2 & C3 nerve cauterization before I was sent home. This seemed to have helped temporarily relieve my headaches for a short period.
I’ve seen probably over twenty plus doctors over the past 8 years
After traveling back to Chicago from Mississippi several times I decided to look for another doctor. I’ve seen probably over twenty-plus doctors over the past 8 years. In 2016 My husband set up an appointment with a doctor at a major medical center in Florida. My visit with this doctor made more sense to me than any other doctor’s visit. He explained to me after a full examination and going over all my records that my problem was upper cervical instability at C1 and C2. He said, when a person has had a severe whiplash trauma, sometimes the damage it causes will not show up on film. After all these years I finally had some sort of answer to why all the other doctors were not able to help me. He then referred me to a doctor in Philadelphia who began treating my pain with nerve blocks at all upper cervical discs. Over the past 6 months, I’ve made 4 trips there for all sorts of treatment. I believe every nerve in my neck has been cauterized.
Two out of three surgeons feel that I would benefit from fusion surgery.
This doctor has been the most caring and optimistic doctor I’ve ever seen. He performed a discogram on me and during the procedure, my pain was intensified when he hit certain spots. His diagnosis is that my pain is coming from C2 and C3 and C3 and C4. He believes that I would benefit from a cervical fusion at those levels. I’ve already met with three different surgeons and two out of three feel that I would benefit from the surgery.
I know the risks involved and also know that the surgery may not help end my headache. I’m so scared to get this surgery done and it does not help at all and then I may have created another problem.
Postural change and structure change
We have seen many patients who report a worsening of their symptoms and conditions when they turn their head one way or the other or when they stand up. Many of these patients report alleviation of their symptoms when they lay down. This includes the onset, duration, and severity of headaches that these people suffer from.
In the journal, Practical Neurology, (1) doctors from the Mayo clinic offered guidelines in diagnosing secondary headaches. Here are some of the learning points of this paper in understanding a possible cervical spine primary cause.
- Headaches precipitated and aggravated by postural change raise concern for abnormal intracranial pressure, either too high or too low.
- Headaches that are worse when getting up from lying down flat on one’s back. “Supine raise” can be a concern for increased pressure.
- Headache that occurs within seconds of being upright and resolves quickly after lying horizontally suggests low CSF pressure.
- Individuals with spontaneous intracranial hypotension might report that the headache is usually worse the second half of the day or after they have been upright for a while or that they usually feel the best in the morning before they get out of bed.
- Evaluation and management of low CSF pressure can be very complicated, especially if classic radiologic findings are not present.
- Cervicogenic headache can also be aggravated by the position because of axial loading of the spine, or head-turning to a particular position. Orthostatic hypotension and postural orthostatic tachycardia syndrome (POTS) can also cause postural headaches, which are usually accompanied by other symptoms of orthostatic intolerance including dizziness and presyncope (feeling faint or you feel that you are going to faint.)
MRI accuracy in upper cervical instability
In the story above we revealed a woman who had a long journey into discovery. The discovery she wanted was what could be causing her terrible headaches. As you are reading this article, she may have a very similar story to yours. Years of searching and two dozen doctors later the discovery that she has upper cervical instability and the recommendation that she have neck fusion from at least C1 through C4 with no guarantees the surgery will work and certainly no going back if the surgery failed. To be clear, many people have successful cervical fusion surgeries, the people we see at our center are mostly trying to avoid fusion because of a poor prognosis for success.
But how did this person get to the point of multi-segment fusion? Why wasn’t upper cervical instability revealed to her long before?
The reasons why this condition goes undiagnosed by medical doctors and health care professionals are manifold including:
- Headaches, even sub-redeem free occipital and occipital ones, are common innocuous. In other words, the headaches themselves are not considered harmful and are just one of many complaints.
- Many doctors are not trained to evaluate the upper cervical spine.
- Static x-ray and MRI analyses often do not show upper cervical pathology.
- Radiologists who read the x-rays and MRIs emphasize the lower cervical vertebrae and discs in their readings, often not even commenting on the upper two cervical vertebrae.
- There are invasive procedures to decrease nerve impulses for the occipital and trigeminal nerve such as radiofrequency ablation and microvascular decompression, so these techniques are emphasized for treatment; however, occipital and trigeminal neuralgia are both typically from upper cervical instability.
- Other common symptoms of upper cervical instability include reduced neck range of motion, neck pain, insomnia, dizziness, lightheadedness, neck pain with movement, preauricular (ear) region pain, ringing in the ear, and vertigo. Again, these are common symptoms for which there are drugs to control the symptoms so upper cervical instability is not in the differential diagnosis.
More reading
Very few clinics in the world specialize in regenerative treatments for painful neck conditions and cervical spine instability: Caring Medical is one of them.