Read Part One: The Surgery here.
I don't like to complain, but it is time I explained this to my friends and family.
For the last 3-4 years, I've been having increasing difficulty. What started out as a sore foot and then back pain ended up also including numbness, weakness, and for the last couple of years, constant pain.
I've had a lot of symptoms all over, so finding a diagnosis was difficult. MRIs in 2005 of my cervical (neck) spinal cord revealed a syrinx; a fluid-filled cavity in the center of my cord.
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| Cervical MRIs showing syrinx in spinal cord. |
This condition is called syringomyelia (SM), and it was later found in lower parts of my spinal cord as well.
Now that I knew I had syringomyelia (SM), I had to find out why. SM is always caused by something else; it is the effect of something causing damage to your spinal cord. I didn't have the most common cause of SM (chiari malformation). I was told multiple times that it
was uncurable, so in 2006 I concentrated on working and living my life. My prognosis was a slow neurologic decline and chronic, sometimes severe, pain.
People often say, "don't take your health for granted", and I learned why. I was thankful that I didn't have something more deadly, but it was really hard to adjust. Going from running 30 miles a week, mountain biking, snowboarding, hiking, etc., to struggling to walk at times, was tough mentally. With a positive attitute and a lot of support, I dealt with it.
In the mean time, I was active volunteering and keeping up with the latest research. I met many of the top neurosurgeons in the country for this condition. The fact was, adult neurosurgeons didn't understand how to treat my type of SM.
This year (2007), I think I found an answer. In October, we flew to New York to see some experts, and they thought they might know what is causing the damage to my cord. It is a long an complicated story, but multiple neurosurgeons (3) now believe that my spinal cord is tethered
at the bottom. Being strung too tight has damaged my spinal cord over the years, and it is starting to show.
Read Part Three: Theory of Treatment.
3 comments:
AJ -
Just curious how you're doing after your TC surgery. Looks like you had it several months ago. I just had the same surgery as you on May 13 '08(my filum was sectioned using the same minimally invasive approach you had). I assume you're doing well, but would like to know if you're back to exercising and such.
Thanks -
Cathy Barnes
I'm doing alright. Not worse but not much better. It depends on which day you ask me. I will write a 6 month follow up on this blog after I get the post-op MRIs and so on.
I've been walking every day since week two or three after surgery. I even bought a cheap pedometer to enforce my 2 mile per day minimum.
That's good to know you're getting some exercise. I'll look forward to seeing your 6-month follow up post.
I used to do long hikes and bike rides, but got too weak to do more than 5 - 6 mile hikes with only minimal elevation gain before having the surgery. Forget about riding a bike. Too much back pain. I hope in about a year I'll be back to my old self, but who knows...
Cathy Barnes
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