Taking tests in school I never much cared for multiple choice tests that allowed for more than one right answer, as in check all that apply. I always had an uneasy feeling that I was being tricked somehow, or that I was missing something.
I get the feeling my doctors are feeling the same way right now as they sort through my symptoms and test results. It seems that I have more than one reason for some of my symptoms, and they could be working together in some cases. Don’t worry, I’ll explain.
So let’s narrow this down to one issue I have right now out of the dozens. We are actively working on vestibular dysfunction. The vestibular system is a complex combination of eyes, ears and central nervous nervous. I have several abnormal symptoms, but I want to focus on just one to show how difficult this process is. I have trouble standing on uneven surfaces. By trouble, I mean I get disoriented, a dizzy, lightheaded feeling comes over me, my vision dims, my chest tightens and it gets difficult to breathe, my knees buckle and sway, my leg muscles spasm and tighten, I get nauseous…depending on what it is I fall over, nearly pass out, or need help getting off the surface. Examples are squishy snow, mud and sand. Memory foam. It takes forever to find shoes without memory foam now, but it is absolutely evil. Basically any type of foam. They have a blue bit of foam they keep pulling out at the doctors or physical therapy that I now refer to as the blue bit of doom. It looks like this.
Seems innocent enough. But when I stand on that, I completely malfunction. Okay, the first time it was a complete shock to everyone and I did almost fall and we all went “what the heck was that?” But now they pull it out, and I say I cant stand on that, they give me a bar to hold onto and a couple of spotters and allow me to ease my weight onto it.
So it shows a problem with my nerves, that part is clear. But where? The physical therapist was explaining to me that my legs don’t seem to be getting clear signals back to my brain. When we encounter squishy surfaces it engages our balance system and our brain has to make all these tiny corrections of flex and relax. It seemed like the “relax” portion of the messages were not coming back, so my legs would get tighter and tighter only, never correcting for this position, completely lost and confused.
So I’ve been mentioning this to several different doctors now and with the new data, it may not be all from my lumbar spinal cord injury, but a processing delay in my brain as well. Like all these confused signals jam up my brain and it can’t keep up like it used to. This is my current understanding anyway.
What do I do with that? Meet more doctors of course. I see a spine rehab specialist tomorrow to see if he can help sort out which of this stuff is coming from the spine and which is coming from the brain and then maybe we can make a plan after that. I’m extremely anxious but also a bit eager to meet this new doc tomorrow. He is basically the guy I should have met nearly 30 years after my first back surgery went wrong and my parents didn’t let me have aftercare. I’m hopeful he may have some tips or meds for me to help with all the issues that come along with a spinal injury at waist level: bowel, bladder, digestion, twitching legs, legs moving in sleep, muscle spasms, muscle weakness, drop foot, knee pain…. and now how it has affected my central nervous system, chronic sleep issues, migraines.
I’m very curious if he has another piece of this puzzle, and maybe some advice to make my life slightly more comfortable. It’s going to be difficult and embarrassing to discuss some of these private issues, but I feel I’m up to it. I have my notecard with a checklist so I don’t forget anything. I takes months to get in and see a doctor like this, better be prepared for your 10 minutes with him. I’m only half joking. I’m sure I will be assessed by a PA or fellow or student thoroughly and then the doctor will try to dismiss me, and it will be up to me to make my case both interesting and valid. I’m also being realistic. I understand I have had this injury since I was 12. I am not asking for a cure and I know it isn’t likely that they can improve the conditions of the nerves themselves at this point. But I want to hear him tell me that AFTER he has done some testing and really considered my situation. Which I know means hours of poking and prodding, likely some nerve conduction tests which are not pleasant at all. And hopefully some other tests or procedures that I don’t even know exist that is brand new and high tech and showing promise with incomplete injuries like mine. I’m just so tired of them giving up on me before even starting, so please new doctor, please be open minded.