It is a surreal experience to hear that your brainstem is migrating too far up into your head. Except, doctors never say things simply, so I wasn’t actually told this – I was told instead that I have “Basilar Invagination”.
Sounds kinda crazy, doesn’t it? I mean, when I was told this, I felt physically fine. Wouldn’t this cause one little problem or two? This sounds important – one’s brainstem being in the proper place and all.
If it was in the wrong place, well, wouldn’t that be a big problem? Wouldn’t I know this was going on without having to be told?
I’ve learned that my brainstem is functioning as if this thing has a mind of its own, no pun intended.
I was first told this in 1996, when I was 25 years old. I was told by doctors “this was potentially very serious” , and also “probably just no big deal”. I went through what one would typically expect any reasonable person to do – I freaked. Then I calmed down, and decided to become informed.
Why was this happening? What could I do about it? How could I prevent it from doing any damage to my health? These were the questions I asked my doctors.
Some told me one thing – “Neck traction, that will do it!” Others told me another, “Whatever you do, don’t do neck traction – that’ll make it worse”.
I stopped the neck traction I had been doing for the last 6 weeks. I took a deep breath. I tried to relax.
When you have a health problem sometimes it is really easy to just ignore it. Denial, it ain’t just a river in Egypt, if you know what I mean.
There were many times I wished that I just didn’t know I had this little brain stem issue.
The reason my brainstem had decided to migrate up into my head has to do with pure physics. I have Osteogenesis Imperfecta – brittle bones disease. My bones are soft. My head is heavy. And my spine just couldn’t hold up the weight of that all powerful brain and head of mine.
So up goes my brainstem and down goes my head. So long neck. Bye Bye. Literally, look at a picture of me now versus 10 years ago – I swear, I really used to have a neck. I mean it.
Eight years have passed and I have no huge worries around my brainstem problem. I mean, I am fine. The sky has not fallen. I am still breathing, and moving, and living, and thriving in this world.
And I’ve made a conscious decision to live my life one day at a time, control what I can, and not worry too much about what I can’t. I’ve put my brainstem issue on the back burner.
It is now fall 2004 and I have a pinched nerve in my arm. I go to the doctor to see what can be done as pain relief. Again my brainstem issue rears its ugly head (again, no pun intended).
“You see,” I am told, “It isn’t your arm that is the problem – you have a pinched nerve in your neck and head” – “this is called referred pain”, I am told.
Another round of tests ensues.
MRI. CT Scan. Blah Blah Blah. My brainstem will probably be fine, but I’ll probably die from cancer after all the radiation and tests I’ve had. The irony of it all, I tell you.
I just want my arm to work – I need to wheel – take my dog out at night, hug my husband, to wash my hair. This arm of mine, it is a pretty important part of me.I like it. I want it to work.
So now the doctors will confer, and I will probably get several different opinions about whether I need a neck fusion, brain surgery, or some combination of the two.
Meanwhile, my arm still hurts. I just want some pain relief. I want optimal functioning. I want to avoid major surgery (I am, after all, not a glutton).
In the past few weeks, I’ve let the doctors continue to confer (there is an information vacuum, did I mention that, about most rare disorders?).
I’ve decided to empower myself through alternative remedies. I’m getting acupuncture, and I’m swimming a few times a week for physical therapy. I need to leave work early some days for appointments, and I need to force myself to make exercise a priority, although I don’t feel like it many days.
Guess what? My arm is feeling better!
I think I’ll go on living my life – a day at a time. As for my brainstem, I’ll just keep sending it positive imagery. It can do what it wants, as long as it doesn’t bother me.
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