CCI + Tethered cord series

In 2011, I became suddenly ill after an acute viral infection. By 2012, I progressively lost the ability to read, think, or walk. When doctors could not figure out what was wrong with me, I faced intense medical skepticism and neglect. I was misdiagnosed with conversion disorder (a modern name for hysteria) and became bedridden.

Finally, I was diagnosed with myalgic encephalomyelitis (ME), (commonly called “chronic fatigue syndrome,” a condition that is the same or similar to what many people with “long COVID” face). I saw specialists, met all their clinical criteria, and went through extensive testing to help confirm the diagnosis. I tried a wide range of treatments, from mold avoidance to antivirals, Fludrocortisone (for POTS), and Mestinon. I was a responder to these drugs and (and to mold avoidance). Slowly, I moved from 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 that caused me to stop breathing every time I turned my head or laid on my back, whether I was asleep or awake. 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 syndrome (MCAS) has improved significantly, too.

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

Diagnosis

• A new diagnosis to add to the list – I stopped breathing and was diagnosed with craniocervical instability: my initial announcement to the community

The backstory

• Path to diagnosis: Part I (An empty sella) – how I started on my path to getting diagnosed with CCI
• 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
• Path to diagnosis: Part III (Traction) – here’s when I knew that CCI was causing my symptoms
• Path to diagnosis: Part IV (Breathing)

Surgery

To come

Recovery

Health updates

• Health update #1 (February 21)––Healing takes time.
• 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.
• 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.
• Health update #4: Recovery is a…
• More updates to come

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:

• Onset: Part I (Viral onset)
• Onset: Part II (Mold damage)
• Onset: Part III (Connections)

Pathology

• Pathology: Part I (A walk around my brainstem)
• Pathology: Part II (Could PEM be a symptom of neural strain?)
• Pathology: Part III (“Brain fog”)
• Pathology: Part IV (CCI and ME: comparing models)

Other theories

• 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.)
• 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!)
• How infection can damage the cervical spine (On Tuberculosis-induced CCI, Brucella-induced cervical stenosis, and Grisel’s syndrome, a post-infectious AAI, as potential model for a subset of ME.)

Research

• New study on “craniocervical obstruction” and ME show high rates of hypermobility, hEDS, fibromyalgia, and signs of intracranial hypertension in an ME/CFS cohort.

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)
16. Pathology: Part I (A walk around my brainstem)
17. Pathology: Part II (Could PEM be a symptom of neural strain?)
18. How infection can damage the cervical spine (On Tuberculosis-induced CCI, Brucella-induced cervical stenosis, and Grisel’s syndrome, a post-infectious AAI, as potential model for a subset of ME.)
19. New study on “craniocervical obstruction” and ME show high rates of hypermobility, hEDS, fibromyalgia, and signs of intracranial hypertension in an ME/CFS cohort.
20. Health Update #4: Recovery is a…