Updated: May 10
After a year and a half of relapsing, throwing everything we've got at my symptoms and getting no relief, Dr. Rowe suggested that I have specialized imaging done of my neck. I've also been wearing a hard cervical collar most hours of the day and night for almost 4 1/2 months--which makes it difficult to do much, but also almost eliminates my neck pain as well as the buzzing, humming and throbbing at the base of my skull.
For those of you who have followed my story, we've been asking "What the neck?" since I first got sick. I've had imaging done as well as been evaluated and diagnosed with thoracic outlet syndrome, but we still felt that more might be going on.
New imaging techniques, new research by Dr. Rowe, and reading by a radiologist skilled in looking for the issues often found in patients like me is what we needed--and wasn't available when I first got sick 24 years ago.
Dr. Rowe would comment on my thick file folder and say: "We keep coming back to the neck."
Now, after all of these years we have a solid diagnosis for my neck--one that is equal parts validating and overwhelming.
Imaging showed a condition called craniocervical instability (CCI). This means that the ligaments connecting the base of the skull to the top of the spine or first vertebrae are too lax. This likely explains the severity of my illness. This instability can compress the spinal cord and cause symptoms of ME/CFS and dysautonomia. My body picked the worst location for instability!
Last fall, I was also diagnosed with moderately severe to severe hearing loss, for which I now wear hearing aids. We are waiting to learn if this may be caused by the CCI.
No path forward looks particularly rosy: we hope for a miracle in PT or head towards neurosurgery.
The testing for these conditions requires a CT scan and a seated Open MRI--during these tests the neck is positioned in flexion, extension, lateral rotation and neutral. During flexion in the MRI, my hands turned red and puffy, I felt clammy, started to feel lightheaded, began sweating, and then was hit by nausea and feeling faint.
This is only a two minute scan. Because I was secured in the extension position (head titled back), I buzzed the tech to say I felt sick. She said: "Oh, you're not going to throw up."
She got me a bag "just in case", which I, of course, used. Ha. It's always nice when others tell us how we feel in our bodies.
When I asked Dr. Rowe if he was surprised by the results, he said he would have been shocked had we not found something on the scans, however, he had originally suspected I had compression of the spinal cord on lateral rotation.
Back in 2012, when we did fairly extensive imaging, my MRI looked clear of any signs of anatomical abnormalities, as it did this time. What we had this time that we have not had in the past was the CT scan, which did indeed show the instability. At that time, I also made it through a 15 minute scan in extension--which was painful and caused near fainting, but certainly not at the speed and intensity I experienced the time. Ten years ago, Dr. Rowe was quite stunned when we didn't find an abnormality with my neck. His gut has been right all along--we finally have the tools to identify the CCI.
Rick, the PT that has done research with Dr. Rowe for decades, said: "Vomiting Schmomiting!" and cautioned that he would have to see how much he could do with PT. He's been the only PT who has been able to make solid changes in my health in the past, but is just now reopening his practice since the pandemic started.
We are overwhelmed as a family. I am sad to lose so many freedoms again, to be so limited in my functioning, and to face so much more uncertainty about a path forward. We are thankful for Dr, Rowe's research progress since I first got sick--that allowed me to find this answer to why I am so sick.
I've received a lot of questions: Why did I relapse now? Have I always had this? What made it worse now? What do they do for neurosurgery? Will it improve my symptoms?
We don't have a lot of the answers right now. It could be that when I purchased Birdie the Bike for my 45th birthday in October 2020, riding her created trauma to my neck and made the instability worse. It could be that as I've aged my ligaments don't spring back like they used to.
I think neurosurgery can sound like an extreme treatment option to some. However, I have been severely disabled for 24 years. No decision or choice we've made or continue to make is done so without painstaking effort and research and medical care. I wish I could say that strengthening my neck would do the trick, but I'm not this sick from weak neck muscles.
Right now we're battling insurance trying to even find a way for me to see a neurosurgeon who treats patients like me. Don't be rare in America. My blog is called Em of One for a reason!
Our first step is a trip to see Rick next week for four hours of PT--which is all highly specialized manual therapy. We hope to have a better sense of our path forward after seeing him. In the meantime, I ask for your grace as I navigate a path forward, as I grieve and process, as I focus on my health, as I battle the insurance to try to see the specialists I need to see. Thank you to those of you who continue to lift me up, adapt to my ever changing health, hold space for me even when I have no spoons to give, and love me for me.