Monday, September 10, 2007

So....this is rare!

I will explain later on just what happened to me, but I wanted to emphasize that this is a rare injury. However, this statement must be qualified.

Most doctors who treat a patient suffering from a Jefferson Fracture will never before have seen this injury.

Most patients do not survive this injury (a 4-plc Jefferson Fracture).

If you meet me, I will probably be the only person you will EVER meet in your lifetime who has suffered this exact injury.

I was told by one neurologist that it's not that this injury is so rare, but few doctors actually see a patient with this injury because the victim usually does not survive. "They are not coming to us, the doctors. They are going to morgues," I was told.

A UCLA expert muttered, after reviewing my CT scans from the day of injury, "Not many people walk away from that one!"

Thus, it has been my own challenge over the last 3.5 years to find a doctor and/or specialist who has every dealt with someone with this injury. My physiatrist told me, when I asked, that yes, he'd had a couple of people over the last 25 years with a C1 fracture, but "not one as bad as yours."

And almost as importantly, I have no peers. I have no one I can talk to who has gone through this same injury. In fact, I have never met anyone who has experienced any fracture of the C1. I did meet a woman last week who had fractured her C2 and C3 in a riding accident, and she had had a halo on "for months."

I've never seen anyone online, in a support group, who has this injury. There is NO support group specifically for those who've suffered a Jefferson Fracture. I can visit a spinal cord injury site, but have not read any posts from anyone who experienced the same thing I did. This does lead to some feelings of isolation. When I mention to some people that I "broke my neck," some will not quite "get" the severity of my situation. They've known people who have broken their necks and gone back to bullriding or riding race horses. There's nothing, I've learned, that I can do to explain. It's not important to me that they understand.

When I asked my neurosurgeon if he'd ever seen a Jefferson Fracture before, he answered, "Of course...it is the most common of C1 fractures." But this is a sketchy answer at best. How many C1 fractures has he seen then? How many survived? But I did not explore the questions any further. I could read between the lines.

Because of this isolation, I have found friendship and support within the community of those with Arnold Chiari Malformation. I have not been diagnosed with ACM, however, I share some of the same symptoms and challenges, the neurological ones. I now help serve as a moderator at the Chiari Connection International support board. But...more about Chiari later!

8 comments:

Anonymous said...

I HAVE HAD A JEFFERSON FRACTURE! WOW!!!!!! i am not alone either. mine was from a cheerleading accident. my neurosurgeon said the same stuff, wow are we blessed. i want more info. and i appreciate your blogs!

krista parks
kristianparks@hotmail.com

By His Grace said...

Krista, I was hoping that my blog would lure someone in who had suffered the same thing! Not that I'd want for anyone to have had this, certainly. I sent you an email and can't wait to hear further from you about your own situation, and how I can help.

God bless you!

Anonymous said...

I just came across your blog. I know this is an old post, but I thought I'd still comment anyways.

I was in a rollover accident in Montana in 2007. I broke C-1 in 4 places. I was in a neck brace for 8 months. One of the breaks was too far to heal on its own, and tissue has formed around that makes it stable. I haven't had any surgeries, but have been left with the option to have one.

I know how frustrating it can be to get so many different/contrasting opinions from doctors. You sound like you have an amazing attitute for what you're going through. Very inspiring!

Anonymous said...

i had a Jefferson Fracture when i was 14 now age 38 and survived with no after affects at all. i was in a minerva plaster for a couple of months but totally fine after , after a siple tumble down the stairs . i then broke it again when i was 21 and again no after effects

Mary mitchell hurst said...

November 15, 2012...I will never forget. I fell down my stairs at age 57...flipped over ended on back with head toward stairs and feet over my head. I called out to Jesus to save my head, neck, brain, life...I am a single parent. The fathers of my children are already dead. I was home alone for the weekend...my teenager was on a band trip. I was able by the grace of God to crawl about 20 feet to a landline pull it down and call 911. I have been told I have a JF of C1 and C2 broken in 4 places plus a bone chip. I was put in a soft halo and was up walking within 2 days. Therapists at the Nursing home I spent 3 weeks in did not know what to do with me because I had no apparent problems physically, mentally, cognitively. I was downgraded to hard collar after 8 weeks, now I alternate between soft and hard collar depending on how I am doing that day. I am actually more tired and achy than when first injured. I know I have done too much many days. I miss holding my grandchildren and wonder how long til I can drive, hold them, and/or work some kind of job again. I am glad i found your blog. It reinforces the blessing of my life.

By His Grace said...

Mary, I'm so glad you found me and wrote! This blog goes from 2007 thru to April 2012. I need to update it, for sure. I finally had a surgery, a year ago tomorrow! The neurosurgeon was wonderful, and the fusion/stabilization was done very well and was a success, as far as stabilizing the C1 and sub-occiput (back, bottom part of the skull).
I'd had hopes that the surgery would have more of a positive impact on my health and my "Central Pain Syndrome." However, it did not. Central Pain is pain eminating from the central nervous system, ie brain, brainstem and/or spinal cord. I found a website that is simple, but it does a good job of what I deal with every day. Go to www.webmd.com (it's a site owned by the Cleveland Clinic)...and put "central pain syndrome" in the search box.

Often, this pain doesn't peak or kick in until a few years after the injury. As it did in my case. I am left very, painfully weak. The article mentioned above said this pain is likened to the pain people with MS deal with, when they are in a "flare." Or, fibromyalgia. Or Parkinson's.

You are only a few short months from your injury; try to be patient! I also did too much soon after my injury; I was out lunging horses, which was ridiculous, having a 1000 lb horse on the end of a long line, and when the horse shakes his head or turns it, that movement travels right up the rope to my hand and arm, right up to the C1. In retrospect, I should not have done it. But no one (doctors, etc) told me that my injury was serious until I found a neurosurgeon in NY who would talk to me and explain things, who really knew what was going on.

So, pls try to be patient and careful. You don't want to reinjure yourself and end up worse. You are very blessed to be walking and talking!! Christopher Reeve had the same injury you have! And you know how he ended up. Thank God that you are doing as well as you are!!

It's a hard road to go down. People will not understand why you still suffer symptoms when you look okay. They will think that as time passes by from the date of your injury, you should be healing up and moving on. But some of us don't move on. Some, in fact, many patients who had a JF end up with a good recovery!! They heal up and move ahead with their lives. I pray that will be your story!!

Pls keep in touch, and respond here on the blog anywhere you want! thanks again for writing!

gentle hug,
Virginia

Anonymous said...

Just fractured my neck the same was a little while ago.. Had no idea it was so rare and that people don't usually survive it..

Anonymous said...

Thank you for writing this. It gives me more reasons to be grateful to God for my life and what his goodness, mercy and grace have spared me from. He has truly given me a miracle. No, not just one miracle but a long series of them. Think of this! A 50 ft tree hit me square on the head!  I should be dead!... or paralyzed!  Yet, I did not get a crack in my skull, fluid on the brain, brain bleed, or even a HEADACHE!!! No goose egg, no back pain and I don't have any chronic pain. Even to this day I have not gotten a headache.  My top vertebrae that protects my brain stem got fractures (the C1) and four other vertebrae took fractures (C7,T1,T2,T3). That's five broken vertebrae. Any one of those broken vertebrae would have gotten me in a wheel chair. Instead of paralysis, I got a lot of pain in the neck (until my halo brace. Then all neck pain went away).  I got stitches on my head... it took 2 doctors about 2 hours to stitch me up about 6 inches of cut.  Plus a pretty deep gouge on the top of my head that they could not stitch. What I did get, was the comfort Jesus gives through the Holy Spirit. Jesus walked this path with me every step of the way. He upheld my countenance and gave me grace. God is alive , well and aware of each of us. I thank Him and praise Him for the things He has done. May you find Jesus in your life as well. ~ Judi Galloway, Caledonia, MI