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Self-Advocacy in Medical Care

Aaron Baker
Spinal Cord Injury Lifestyle Specialist | Shield HealthCare
08/10/23  11:07 AM PST
self-advocacy in medical care

Your Body, Your Voice, Your Choice!

Prior to my injury, when faced with a broken bone or infection, I left my diagnosis and course of action up to the medical professionals. However, now that I am 24 years post cervical spinal cord injury and have learned a thing or two about my body, I am inclined to be more proactive. I ask my doctors more questions, gather more information, and advocate for what I suspect I need.

Vertigo with Spinal Cord Injury

Recently, I began experiencing bouts of vertigo. These episodes would come and go, and I chalked it up to poor blood circulation, dehydration or fatigue. However, one week in June it became so horrible that I fell in the shower and opening my eyes, even while sitting, was too much to bear. Where did this sudden complication come from? I needed answers immediately.

My wife and I went to Urgent Care hoping it was an inner ear impaction or something that could be easily fixed with an antibiotic. Thankfully, we were met with an Urgent Care doctor that had a background in neurology and insisted we go to our local Emergency Room. At the suggestion of the ER doctor, he wanted to run the standard tests: blood work, vitals and scans. I chimed in, and further requested an MRI. I knew that the MRI would be able to detect – if there were any – inconsistencies within my body and organs. (See blog “The Difference between an MRI, X-Ray or CT-Scan” for more information)

The MRI of my brain and cervical spine ruled out any brain bleed or tumor, leaving the medical staff and me relieved of any serious “emergency”. I was sent home with a prescription for an anti-vertigo medication and to follow up with neurology and my primary doctor.

My wife and I were proactive and got right to work on consulting other doctors while we waited for an appointment to open up with neurology. We decided to consult with an Ear, Nose and Throat doctor to rule out that idea of an inner ear impaction. The ENT doctor conducted a test to see if a crystal had been dislodged in my inner ear canal and concluded that was not the problem. He then suggested I come in the following week for a “balance test”. He explained how it would not be covered by insurance, and required me to be in the office for over two hours while they used specialized equipment. Now I am not saying he was wrong to offer that additional test, but since he had never worked with a recovering quadriplegic, and he had no baseline for my ‘normal’ balance instabilities, I deemed him as plan Z and moved forward with our next appointment with a different doctor.

Which takes us to where we are currently: consulting with two different offices for ‘careful’ chiropractic work. The first chiropractor we visited was able to temporarily relieve some of the vertigo by releasing my ears, applying heat and electrodes to my neck, and doing a light adjustment of my spine. I advocated for myself and explained how I was uncomfortable with any “cracking” of my neck, especially before conducting an X-ray.

I had a full view X-ray of my cervical spine and we were able to see the degradation of C1, 2, 3 and 7 which are the vertebrae above and below my fusion. It appears that the space between these vertebrae has been reduced by gravity, aging and reoccurring compression.

A second practitioner was sought out—a cranial/sacral expert who works in conjunction with the rest of my treatment team to begin releasing my face, jaw, and cervical muscles to create more space between my skull and vertebral column. Together, we have tentatively determined that my condition is called Cervicogenic Vertigo: a result from poor neck alignment, fusion, and trauma to the cervical spine. This type of dizziness most often occurs when I move my head and neck, and can also affect my sense of balance and concentration.

So, what is the point of me sharing all of this? Well, for one thing, I am constantly trying to find a new base line with my body, and the recurring complications that come up. I am hoping by sharing it may help someone else with their own question marks.

Additionally, I hope others find their inner strength to advocate for themselves and push for what is best for their condition. Spinal cord injuries are all so unique, and not all doctors have experience with them. However, we are the ones who live with our bodies 24 hours a day, 7 days a week, and we need to be empowered by listening and trusting ourselves more. Ask more questions, have more choices!

My new set of complications have not been resolved, and some days are worse than others, but engaging with my medical care gives me the confidence that I am not leaving any stones unturned. I will continue to seek more answers and advocate for myself.

In Health,

Aaron Baker

 

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