My partner left early this morning to visit an old school friend for the next four days. Since getting the nine pets taken care of in the morning is a lot of work, and I am still feeling run down from the Charleston trip, I decided to take today and tomorrow off to have four days of solitude to recover and maybe catch up on my to-do list a bit.
I still have not heard from my father, which is good. My brother… I still can’t get a good read on him, but he and my mother seem to be getting along well and I’m going to make another attempt to convey my intense dislike of phone communication in a diplomatic way. Also, someone probably needs to broach the subject of our familial hypermobile Ehlers-Danlos Syndrome to him, just in case he lost the genetic lottery, too.
After having to make a second request, I finally got the full record of my trip to the neurosurgeon. It’s a brief paragraph that isn’t much more informative than the actual appointment was. The note does say that the measured clivo-axial angle (CXA) was 130 and that there was ‘mild medullary kinking’ so at least I have a bit more detail.
I could see in the record copy that was sent to me that the inaccuracies in the medical history list that I contacted them about after my appointment have still not been corrected. Also, the notes, entered almost a week after the appointment, referred to me as a patient “known to have” cranialvertebral instability, POTS, and tethered cord – except two of those things I was not yet diagnosed with, and I thought screening for them was the whole purpose of my being seen there…?
Only after I contacted them afterwards, specifically asking for clarification about my symptoms, did I get a statement back from a nurse saying that ‘probably’ the dysautonomia was related, and ‘MAYBE’ (her caps) the tinnitus as well. Except, from research I have done in the month since the appointment, deformation of the brainstem (medullary kinking would fall into this description, I think) can manifest as cervical medullary syndrome and tinnitus is totally one of the symptoms, as are a number of the other issues I described.
Am I wrong for being a bit confused and frustrated by the whole experience?
On a more positive note, my morning headaches have been a bit better since I’ve been wearing the neck brace at night and using Banana Bag oral electrolytes first thing in the morning on bad days. I bought an inexpensive recumbent exercise bike and have been trying to build up to thirty minutes of cardio in the evenings instead of just sitting and watching TV. And today, once I have myself sufficiently mentally prepared for dealing with the phone, I am going to try and get myself scheduled at a new physical therapy clinic.
I’m also going to talk to a pilates instructor to see if that’s an option. The nurse practioner at my employer’s wellness clinic gave me the contact info months ago, but I’ve procrastinated on calling. It may not be financially feasible (or she might not be willing to take on an EDS patient with cervicocranial instability) but I should at least look into it. 🙂
Featured Image: Bright red, heavily spotted ladybug sitting on the husk of an unripe ground cherry fruit. Slightly vignetted filter and black border.