Life After a Jefferson Fracture: So it begins...

Tuesday, March 24, 2009

So it begins...

If I'm not answering emails, there is a good reason. I always spend at least a couple of hours in bed during the day, and being too long at the computer causes too much pain. But...

There is so much to be done before a surgery, as so many of your readers know.

I need to do another 24 hour urine test, now that I've been on the daily Forteo injections. They will also draw blood for tests to see how the Forteo is doing.

I need to have an echocardiogram done. Also an electrocardiogram, a stress test, coagulation studies, basic metabolic profile...
I need to get a letter of medical clearance from my primary doctor, and a letter of clearance from my endocrinologist. I need to fax these, plus the echo readings, to the surgeon in NY, plus I need to bring these with me to NY to give the nurse at pre-surgical testing.

My PTP and I had hoped I'd get in to see a neurologist at OHSU in Portland, two hours away, before my surgery but at this point, if it hasn't happened, I don't see it happening. With getting prior authorizations and considering busy schedules, it's not likely. I'd hoped to establish a connection with a neuro before I came home with the halo, in case I had problems with it.

In NY, on April 27, I will be getting:
MRI Brain
MRI Cervical
MRI Lumbar
3D CT head
CT Cervical
xray cervical

Personally, I need to get a phone with larger letters and 300 minutes to take with me to NY.
I need to get some more "no rinse" soap for my stay in the hospital.
I want to go to the thrift store and pick up some strappy T shirts that can be cut at the shoulders and pinned back together to be worn beneath the halo.
I need to get my head shaved.
I need to also pick up at the Thrift store some large shirts that will go over the halo vest, that button or zip up in front.
I must reserve hotel room, buy airline tickets, figure out expenses and send them to work comp (I am so blessed that work comp does pay my expenses and will send me some money to cover them before I go).

Put together my little phone and contacts book to take with me which also includes the cab numbers and such.

I need to buy a new pillow and then sew a seam down the middle, with equal amts of fluff on each side of the seam. This is said to aid in comfort with fusion surgeries, yet I'm not sure about the halo.

Write down contact numbers for my husband...

The checklist grows.

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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

Tuesday, March 24, 2009

So it begins...

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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!