Adding to the list of diagnosis’ I’ve racked up – CCI is a likely missing piece of the puzzle.

Symptoms can include:

  • Head tilting
  • Intracranial hypertension – pressure headaches
  • Brian fog, concentration difficulties, memory issues
  • Dysautonomia
  • Digestive problems
  • Swallowing difficulties
  • Hiccups
  • TMJ
  • Burning mouth and facial pain
  • Strange skin sensations
  • Excessive sweating, Sweaty hands, and palms
  • Itching skin
  • Cardiovascular type disorders
  • Vision problems
  • Tinnitus & ear problems
  • Sinus problems
  • Chronic fatigue
  • Dizziness
  • Balance problems
  • Headaches
  • Anxiety and Depression

I resonate with most of these, but the one benchmark – the one symptom CCI patients share across the board is:

feeling like your neck cannot support the weight of your head.

Oh how many times I’ve said these very words!

CCI is a structural disorder where the ligaments supporting the base of your skull and the cervical spine are not tight enough to actually hold your head up. So yeah, that last symptom is as spot on as it gets!

The spine can be affected all the way down, and many patients with CCI have the same ligament instability in other joints.

What next?

I have an order for another cervical MRI – including specific views which will be read by a neurologist who specializes in CCI. That, along with my symptoms, will direct what happens next.

As I understand it, treatment can be a challenge, especially with the multiple other disorders I battle. Options may include physical therapy and/or surgery to fuse the vertebrae in question. I’ll admit that option scares the heck out of me, but there is also great comfort in knowing that we may be on to a significant component of the challenge of treating the other things.

How Did I Find Out?

I admittedly have a great deal of frustration with the medical community as a whole – but I’ve also been extremely fortunate to have one of the best doctors on the planet. In a zoom appointment yesterday, he noticed that I had been holding my neck pretty much the entire time.

During every appointment I have ever had with him, he has noticed even subtle things I don’t mention – rubbing my knee, squinting my eyes – he sees it.

Doctors have to spend time with you if they’re going to really understand what’s going on with you. A 3 minute appointment might be ok for strep throat or a broken arm, but for a complex chronic sickness like mine, that’s not nearly enough.

If there are 3 things I can recommend for living with Lyme (or any other complex illness), it’s this:

  1. Find a doctor you trust – one who has compassion and who truly listens (and watches). Don’t settle, and don’t waste time with someone you don’t feel comfortable with.
  2. Do your own research – no one knows your body better than you. If you aren’t making progress, there’s a reason…and there are too many off the wall possibilities for one doctor to figure it out.
  3. Listen to your body! And trust what it’s telling you. If you react to certain foods or meds, do more research, talk to your doctor, and make a change. Don’t wait to be told what to do.

Lastly – there is always hope. It might not always feel like it, and sometimes it’s really hard to hold onto – but almost every illness has potential for healing to some degree. The minute you decide you can’t heal is the minute you will stop healing.

It’s ok to have a pity party, just don’t unpack and live there.

My motto

Keep fighting friends. We got this.

2 thoughts on “Cranial Cervical Instability (CCI)

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