UPDATE: MAY 24TH APPOINTMENT WITH DR. BOLOGNESE
Well, I don't know which box to check, yet!
I just completed my first appointment (video) with Dr. Bolognese, surgical director of the Chiari Neurological Center in Lake Success, NY! I know so many of you are anxiously awaiting the news from my appointment, so following is my “first take.” As my parents were part of the appointment and recorded it, I did not take notes, so this is from my memory. I’m super tired from the exertion, so there may be new layers I will add to this after my father transcribes the audio for me.
While my journey with ME/CFS began in my teenage years, my journey in pursuing this angle of ME/CFS began in November after reading Jeff Wood’s “Mechanical Basis” article. It resonated with me, immediately, as I have had neck, fatigue and PEM issues since high school. A common phrase I heard growing up from my parents was, “You don’t want to overdo it, Jilly, you’ll get sick.” These ME/CFS symptoms have progressively gotten worse over the years; these last 10 years have been especially bad. I am not able to work and am mostly couch-bound with some bed-bound days. Through careful management, I am able to do 1-2 errands a week, and a sitting date night with my fiancé (like the ballet, symphony, movies, etc). If I do too much, I have what I have termed an “energy stroke.” Body shuts down, cannot tolerate light or sound or movement, I have to fully concentrate on making myself breathing because my body doesn’t seem to have the automatic breath in response.
I was a figure skater and champion high jumper with an improper landing technique — instead of jumping up, arching and “snapping” (butt lands on mat), I kept in the arched position and landed on my head and face. At 16, I had mono. (Although I have a theory that this was not my first time with EBV.) Before those cute celebrity bobble-heads were invented, I would always say to my parents, “It feels like I have a bowling ball head on a toothpick neck.” Many of you know that I am currently a patient at Dr. Montoya’s clinic at Stanford and, before that, a patient of the late Dr. Martin Lerner in Michigan. I have been doubly-diagnosed with ME/CFS by two of the top doctors in this field.
Anyway, getting back to Dr. Bolognese…what my take on the route of CCI is similar to a Zelda-like quest 🧝with challenges or tests you must pass or complete to face the final dragon. 🐉 I was told today is that I am past the first challenge: the measurements from my MRI, symptoms and injury sustained for 4 years while a competitive high jumper with an improper landing technique all led Dr. Bonilla to accept my case.
I was told that my measurements from my upright MRI fall “in the shitty part of the spectrum” (had a laugh at that) if you are looking at all people’s MRI measurements. I am in the 70-80% range based on measurement alone for a CCI diagnosis. My history and measurement are encouraging but there are additional things I need to undergo before we are certain of what I have in regards to ME symptoms.
I am “halfway there.” Next, Dr. Bolognese is writing me a script to do provocative — but non-invasive — testing through cervical traction with a PT 4-5 times and keep a diary of those times. I am to see if there is a reduction of symptoms during the traction: fatigue, PEM and what I call “energy strokes.” I am also to get a home traction device from a medical supply center to do at home for two weeks.
If there are reduction of symptoms during the non-invasive testing, then my journey with Dr. Bolognese continues. The next step is to do invasive cervical testing. This would be done in the OR; I don’t know the proper term but it sounds like invasive traction under live, guided imaging. From there (or perhaps before), we will start the surgical discussion.
Also, based on my history of sports (figure skating and high jumping), it is highly likely that I have some form of EDS, (only a few types have a genetic test available).
I wish I had the energy, right now, to elaborate further on my symptoms and history, but I’m pooped! 💩 I don't want to steal this thread, so I've posted this as an update on my original post for people to comment, there.