Life After a Jefferson Fracture: Primal Voice

Monday, September 14, 2009

Primal Voice

This morning, I woke up weak and sorta okay, but as usual, about five minutess of being up (and the weight of my head going all upon my spine and nerves etc), I got hit bad.

I had not done anything which caused this. In fact, believe it or not, I have not been out of the yard, not even across the street to get the mail, since I got home last Tuesday!

I wrote these things in the midst of that pain:

"There's something profoundly wrong. There's a lesion somewhere that no one is seeing. I'm no expert, just living in this body. Something is WRONG from the spinal cord. The pain is so profound--this morning---like being in a microwave [oven].

I hurt so terribly-- I need help. I need help. I need a truly excellent devoted doctor to look deeply-- maybe surgery is not the answer, but something is wrong. Somehow I got mixed up in politics [with neurosurgeons]. I've fought hard for myself for five years and no one else but me. I'm to the point of pain and weakness now, I wish I had a true advocate.

I don't have strength and in too much pain to fight anymore. Some mornings worse than others, this morning BAD and I feel exactly as bad as I did right out of the Tethered Cord surgery, which shows me it's spinal cord because the TC surgery was messing with the cord. When I yawn, piercing pain to right ear. Have to have fan 6" from my mouth when I go to bed [in order to keep breathing]...it's not the oxycodone, I'm on such low dose.
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They say pain is truly hard to remember. If it were not so, there would be no second children born!

I include this, just to remind myself of what I was feeling.

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My Diagnoses

4 place Jefferson Fracture (C1) due to trauma in 2004
Atlanto occipital Dislocation (same trauma in 2004)
Tethered Spinal Cord (detethered in Nov. 2007)
Severe Functional Cranial Settling
Craniocervical Instability (CCI) due to first two in list
I have an acquired "Chiari" of 5.7 mm due to the previously Tethered Cord, but I do not have Arnold Chiari Malformation.
Arachnoiditis
Osteoporosis recently downgraded to Osteopenia
Mild Mitral Valve Prolapse and MV Stenosis
Monoclonal Gammopathy ( a precondition to multiple Myeloma, 25% of those with MG evolve into MM. I'm counting on being one of the 75%)

MY C1, 3 years post-injury

This shows my own C1. This is 3 years after my injury, imaging taken in Jan. 2007. The roundish element in upper center is a cross section of the odontoid, part of the C2. Running within the dark center shown here is the spinal cord. To the left of the odontoid, you can see a gap between the bone ends. This should be a completely connected piece of bone. To the right of the odontoid, you can see where that fracture was, and how it has somewhat fused and filled in with bone. The two fractures in the bottom part of the ring cannot be seen from this view. Also, this view is from the bottom, so the large gap/break in the C1 seen here is actually on the right posterior side of my spine. Also, keep in mind that this photo is not life-sized. Bringing this up to life-size will enlarge the gap between the bone ends. Something else to learn about this sort of injury is the job that our ligaments do. There are two kinds of Jefferson Fractures, stable and unstable. With a stable JF, the ligaments are not ruptured, and they quickly pull the bones right back into place, where they will heal on their own as long as the neck is stabilized. In an unstable JF, the ligaments are ruptured from being ripped apart, and do not have what it takes to pull the bones back together. Obviously, and according to my present neurosurgeon, my ligaments were "ripped, broken, ruptured." Of note, the important "Transverse Ligament" runs between that narrow area between the odontoid and the posterior bone of the C1.

Tips for the neurologically challenged!

Best thing I've bought lately? A dustpan with a long handle so that I don't have to lean down with the dustpan after sweeping! Really worth every penny of the $1.19 I spent at the dollar store!
Nausea! A lot of folks with brainstem compression and neurological issues suffer from it frequently. A couple of things have helped me: one is Ginger. I get powdered Ginger and then stir it into ice water with some Splenda, add a straw and it's a delicious summer drink that does a remarkable job in relieving nausea for me. I also use peppermint tea. This is really good, especially right before bedtime, for settling the stomach! **Another tip for nausea: chew gum! Try it, it does work sometimes.
For those with suboccipital pain (and you know who you are!), I think I've found a great pillow to rest my head against in a chair or in the truck. It's an inflatable pillow made for the bathtub, it's shaped like a shell, has four sections to it, and is relatively flat. Softly cushions the back of my head and only cost $3.50!
For neuropathic itch/burning and lancinating pains, apply ice! They say the brain can't process two sensations at the same time in the same area. Ice overrides the itch and pain. Give it a try! Gel paks are great, but I also use frozen bottles of water, and I roll it around my deltoids where needed.
If you wear a neck brace, for pain in the suboccipital area, place a frozen ice gel pak under the neck brace. I use an Aspen collar and this works great!
Buy milk in a gallon, but then halve it by pouring into two containers to store in the fridge. This makes it lighter each time you make a latte or eat a bowl of cereal!

Life After a Jefferson Fracture

Monday, September 14, 2009

Primal Voice

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Appliances for the Cspine-challenged!

Sketch of a Jefferson Fracture

Example of a 3 place Jefferson Fracture

MY C1, 3 years post-injury

3D CT

Favorite Links

Zipperhead"s Fusion

Tips for the neurologically challenged!