CCI + Tethered cord series

Jennifer Brea
Mar 26 · 5 min read

In 2011, I became suddenly ill after an acute viral infection. By 2012, after finding few answers and facing intense medical skepticism and neglect, I was diagnosed with conversion disorder. I became bedridden.

I met all the criteria for myalgic encephalomyelitis (ME). I saw specialists. I got more lab testing that helped to confirm the diagnosis. I tried a wide range of treatments, from mold avoidance to antivirals, Fludrocortisone (for POTS), and Mestinon. I was a responder. Slowly, I moved from the very severe, to severe, to moderate on the spectrum.

In the intervening years, I made Unrest, a film about the experience living with ME and that of my community. Then, in 2018, after surgery for thyroid cancer, I developed central apnea and stopped breathing reliably. Thanks to one neurosurgeon who watched my TED Talk and film, an amazing internist, and an intrepid patient, I found my way to a second surgeon and a diagnosis of craniocervical instability and tethered cord syndrome. After three surgeries in December 2018 and January 2019, all of my symptoms of ME (and POTS) are in remission. My mast cell activation (MCAS) seems to be fading, too.

Below, my full story, which I am currently, gradually, writing and publishing in serial form.

Diagnosis

The backstory

Surgery

To come

Recovery

Health updates

Theory

Here I speculate on my CCI journey, its broader potential implications, and the questions I wish researchers were asking.

Onset

(Nearly) all of my ME symptoms were caused by craniocervical instability. Craniocervical instability was the result of weak ligaments in my neck. Therefore, the onset of my ME must have been related to connective tissue damage. I explore that hypothesis in the following pieces:

Other theories

Disclaimer

Disclaimer (I am an N=1, I have no idea how my case generalizes or does not, there is no evidence of a relationship between ME and CCI, surgery has risks so be informed if you choose this path, and nope, I’m not trying to sell nothin’!)


In chronological order

  1. Disclaimer (Nope, I’m not trying to sell nothin’!)
  2. A new diagnosis to add to the list (I stopped breathing and was diagnosed with craniocervical instability)
  3. Health update #1 (February 21) — Healing takes time.
  4. Are a subset of us members of a lost tribe? (On the possible connections between EDS and ME and the questions I wish researchers were asking.)
  5. Do you have ICC-ME and other FAQs (The previous post somehow had some folks thinking I have hEDS and that I don’t have ME, even though all the previous posts have conveyed the opposite. I wrote this for all avoidance of doubt!)
  6. Health update #2: My POTS is in remission (March 31) — My POTS has been in remission for 21 consecutive days! — an outcome of my craniocervical fusion surgery. More on this and why I think we need to be looking at the brainstem.
  7. Health update #3: My ME is in remission (May 20) — All of the symptoms that started in 2011, after an acute viral infection, are gone.
  8. Thank you + more to come
  9. Path to diagnosis: Part I (An empty sella) — how I started on my path to getting diagnosed with CCI
  10. Path to diagnosis: Part II (Cervical collar) — help was hard to find, I didn’t want to have CCI, but I was getting sicker and sicker
  11. Path to diagnosis: Part III (Traction) — here’s when I knew that CCI was causing my symptoms
  12. Path to diagnosis: Part IV (Breathing)
  13. Onset: Part I (Viral onset)
  14. Onset: Part II (Mold damage)
  15. Onset: Part III (Connections)

    Jennifer Brea

    Written by

    Wife of @owasow. Maker of @unrestfilm. Plotter of revolution @MEActNet.

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