Finding Peace At Square One

Well I’m happy that I’ve been putting a lot of effort into the 5 goals I’ve set for this year. It was also suggested that I write a book or start a blog exclusively on Myelopathy. Which is honestly a good idea, and not just for me, but if others can learn from my experiences it very well be a win/win for all.

At the start of this journey, I will tell you that myelopathy and what that truely meant was non existent in the beginning – even when it was evident that I would require surgery and what the recovery would like. The most common things I was able to read about via the online community or personal stories shared on YouTube prior to the surgery were:

  • Basic anatomy of the neck including discs and vertebrae. Their names and locations.
  • Degenerative Disc Disease (DDD)
  • Anterior Cervical Dissection & Fusion surgery (Commonly called ACDF).
  • Recovery time from ACDF surgery and the most post op symptoms like difficulty swallowing, etc.
  • Bone Growth Stimulators (Commonly used after multi-level ACDF to aid bone growth).
  • Loss of some range of motion in the neck and commonly expect 10-15 degrees per level of fusion.

Unfortunately there wasn’t a lot of information out there for myelopathy patients. I think part of that is myelopathy isn’t all that commonly seen – at least from the physical therapists I’ve spoken to.  

When one needs an ACDF surgery, I imagine most people can pinpoint the exact point where they got hurt. I remember the discussion I had with my neurosurgeon regarding the cord compression that I had as a result of 3 completely herinated (or blown) discs. I was told that if it’s caught soon enough (i.e. less than 6 months) that often times the signal loss in the cord is resolved and people will often make a full recovery, which they consider inflammation of the cord when it resolves. It’s when the signal loss does not resolve by 12 months, is it only then considered permanent damage and is called myelopathy.

What threw me for the surprise of my life was because the symptoms of myelopathy manifest in many different ways and areas of the body, that I don’t think a complete comprehensive guide could ever be written because the spinal cord is essentially “short circuiting”.

Aside from the chronic pain I experience on a daily basis, it would be the symptoms that would pop up out of the clear blue and there wasn’t much out there that would really help me on my path. So writing about these experiences may be a worthwhile experience. Time will tell.

-Rikki

Introductions

Like most of us, I’ve worn many hats along this freak genetic experiment we call life. Some of the hats in my collection are:

An Only Child
First time mother to a preemie (who is now a teenager!)
A Wife
A Step-Parent
An Ex-Wife
A History Buff & Genealogist
A participant in an accidental IT career
A myelopathy patient (spinal cord injury)
A craft-aholic
One of the only SANE leaves in my expansive family tree
BONUS: Fluent in sarcasm
That’s about the long and short of things. The stage is set, all the characters in this drama will be given a pseudonym to protect their identity, but not their stupidity. Admission is free, enjoy the show I call my therapy.

-Rikki (Not sure if my parents were hippies when they named me, but I’ll rock it anyways)