Naturally, you (and I) have a LOT of questions about what the diagnosis of craniocervical instability means, where we go from here, will I have surgery, who will do it, what happened with PT two weeks ago, etc. (In case you missed the initial post, HERE it is.)
Let me just say this: the road ahead is quite muddy. There aren't any clear answers and it will be a very long road of figuring out what works, what we want to do and if I am, in fact, a candidate for surgery. I've always lived in uncertainty with my chronic illnesses. But this has taken it to a new level!
What we know and don't know:
My appointment with Rick in mid-May was great, and I'm so relieved he is back open after being closed during most of the pandemic. Rick feels he can work quite a bit on many of my biomechanical issues (which are quite significant), but there is nothing he can do for the craniocervical instability piece. I do have thoracic outlet syndrome as well, so tackling that is a big piece of our work. We watch for little victories--and one is that I haven't been awakened by bladder spasms since seeing him!
After speaking more with Dr. Rowe last week, my understanding is that there is not a rush for surgery and I need to take my time deciding when and if it is right for me. This is a very oversimplified explanation.
Many of you are asking: when did I get the CCI? Why now? This is where things get tricky. I've had neck pain consistently for 24 years, but I've also had periods of improvement, so it seems confusing as to when the CCI might have developed. The recent relapse seems to indicate that it became a significant issue in the last couple of years.
There are only a handful of surgeons in the country who do this surgery (it's a relatively new field), and none take Medical Assistance. This means a long road ahead of even trying to be seen by one of these surgeons. (I'll save my rant on insurance and disability for another time.)
In June, I'll visit Rick again for four more hours of treatment and we will also see my mom's surgeon (who has taken an interest in my case) to see if he can guide us to a surgeon or advise us otherwise.
At this time, the best answer I have to most of your questions is: I don't know. Or, only time will tell. Or, we are taking things one step at a time.
Currently, our focus is on seeing Rick monthly to see how much functioning he can restore and to see the surgeon in June.
Mentally, I'm exhausted. I've had non-stop appointments since the beginning of April, along with a lot of reckoning with this new diagnosis and loss of freedom. I have little energy for anything other than the demands of my chronic illness right now.
As always, I close with gratitude for your support and willingness to hold space for me even when I cannot reach back. Your support since my new diagnosis helps to sustain me through this. I also close with a moment of joy: in meeting my friend Jess in person for dinner while we were in Maryland for PT. I met Jess through Rowe's Research Runners--for which she volunteers, and makes every MailChimp shine. But, most of all, she's become a close friend. We both crashed after dinner--but it was so worth it!
Blessings,
Emily