Grounding myself
I am terrified that I won’t fly again.
There. I said it.
My neck has been getting worse, as have my headaches, random dizzy spells, and sensations of pressure in my head.
I have never had an upright MRI, so I do not know what exactly is going on in my head and neck region. But while I search for a neurologist or neurosurgeon to help me out right now, I DO know that I do not feel safe during sudden movements or certain changes in position.
Hitting a pothole while driving can be agony. Tripping over a sidewalk crack while walking can give me a 3-day-long headache increase. Bending down to the bottom shelf of the fridge can send me almost to the floor.
So how can I even dream of climbing 20 feet up to the top of silks, hanging upside down while setting up a move, then letting go and completing a drop?
And yet I do. I dream. Awake, I dream of aerial. Asleep, my nightmares reflect the stress and fear that my neck may be as bad as it feels. But awake, with my eyes closed, laying in bed in those moments of attempted peace while I try to convince myself I am comfortable, I dream of flying. I dance through the air and sore in the sky.
So I know I will work hard and do what I need to do to get back up in the air. And if I have truly reached the end of my aerial life, I will find new passions and new ways to bring about my beloved feeling of flying. I guess that’s what flying through it is all about.
I had terrible dysautonomia via an upper cervical crisis (I have EDS but also had a few really bad falls and some whiplash), with really almost every autonomic symptom you can imagine. My stand-up MRI and x-rays were "unremarkable" for upper cervical but my DMX showed a ton of instability with movement. I've been getting posterior dextrose prolotherapy and PRP injections to C7-C0 and they've made a huge difference. The doctor is giving me six treatments total, three with dextrose and three with PRP. My racing heart stopped three weeks after the second dextrose treatment, and I started to have more normal days than not three weeks after the fourth treatment, which was my first with PRP. Before and after DMX imaging shows my ligaments shortening. I'm now walking 5-7 miles a day and no longer wear a brace, with two more treatments yet to go. I'm becoming cautiously optimistic that I might actually get 100% better. Just thought I'd let you know since I know how miserable and scary this is and there is so little info out there—plus lot of people on forums saying prolotherapy doesn't work for EDSers, which just isn't true. Very glad I pursued the treatment option I did.
ReplyDeleteThank you so much for sharing your story and your success with prolotherapy! It's definitely something to keep in the back of my mind. Dysautonomia is so poorly understood, but it makes perfect sense that there are cases in which it has a cervical origin. I'm so glad you found a treatment that is helping you improve, and I hope your symptoms continue to improve!
DeleteYeah - I had a shoulder that was dislocating and the prolo stopped that too. I can't say yet whether it will work for my SI joint... I will say, in terms of dysautonomia, I had it my whole life, but in the form of really mild POTS, so of course it was never diagnosed. But then I fell on the back of my head in grad school, and a few months after I started having episodes of menieres and not being able to make it through voice lessons without feeling like I was going to faint. I never connected the falling with the feelings I was having, and never identified the fainting feeling as being POTS, though it definitely was. My neck never hurt, so I never suspected that either. Those bouts of dysautonomia wore off, only to come back briefly five years later after a surgery, when I'd have to take a knee standing in line at the grocery store. It wore off again after a few months, and I brushed it off as being weak from surgery. Then I had another surgery and it happened again. This makes sense, because being intubated can really mess with upper cervical. Then a few years after that last surgery, I was sitting at a restaurant, turned my head, and out of nowhere I got super dizzy and had the racing heart, dry mouth, raging blood pressure, just an autonomic nervous system gone totally haywire. Quite frankly it was the scariest thing that has ever happened to me by miles. And now I am sitting here six months later, 60% through my prolo treatments, and my body hasn't terrorized me in over ten days. Not ready to call it a total success yet, but before I couldn't go a whole day without something insane happening, so I'm trying to stay positive. But I should say that through all of this, my neck never hurt. I only knew it was my neck because of the position my head was in during that final incident—then it was confirmed by the right kind of imaging. Otherwise I never would have known where to look... I wish you the best on your journey. Thank you for blogging about this!
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