Explain Syringomyelia to Friends: Part 3: Why This Surgery?

This is the third blog entry where I explain why I'm having spinal detethering surgery to family and friends.

Syringomyelia can be caused by multiple different things. In my case, we believe it is being caused abnormal tension on my cord. Here is my understanding of why we are treating syringomyelia--which effects much of my spinal cord--by simply snipping the filum at the bottom (pasted from recent email):

Children born with obvious spina bifida are well known in
medicine, and treated young. However, tethered cord is not
a black-or-white condition. Children with borderline
("occult") spina bifida (a.k.a. occult tethered cord) are
sometimes treated by experts like Dr. W. Adults who
have grown up with spina bifida occulta (me) may not have
serious symptoms until mid age--when more cord damage has
accumulated. Most of these adults are diagnosed with
chronic pain syndromes like fibromyalgia or if they have
syringomyelia (SM) on an MRI, "idiopathic" SM. Most slowly
deteriorate without help, because adult-onset tethered cord
is not widely understood. This is changing (see research links
on lower right of my blog).

Dr. X takes advantage of the gap between vertebra to
minimize bone removal in the lumbar spine; he/she doesn't do a
full laminectomy. She only needs about an 8mm cut of the
dura (spinal sac). She says the procedure takes her about
half an hour. She has done thousands of the procedures
with very few complications. She considers my case
straight-forward, and expects I would have relief of some pain and
numbness. She reports that %90+ of patients like me have
neurologic improvement after detethering. I told her I'm
not getting my hopes up, but I'd be happy just to stabilize
my condition.

As I said in that email, my main hope is just to stabilze my condition, so I don't keep getting worse. There is a little permanent damage to my spinal cord, so I probably won't be back to the old crazy-endurance-sports me. About six months to a year after surgery, I should have a good idea of how it worked.

Explain Syringomyelia to Friends: Part Two, My History

This is the second blog entry where I explain to my family and friends the history of my spinal cord problems (syringomyelia) and why I'm having surgery.

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.

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.

Explain Syringomyelia to Friends: Part One, My Surgery

This is the first blog entry where I explain to family and friends what is wrong with my spine and why I'm getting surgery.

The Surgery
I am having the bottom of my spinal cord detethered by having my filum terminale cut. This filum is a thin cord at the bottom end of our spinal cords which does not contain any nerve, but anchors the spinal cord to your "tailbone", the sacrum.

The surgery is minimal as far as neurosurgery goes. I will have an L4 laminotomy (removal of part of the bone at the back of a lower vertebra). Some muscles and stuff will be moved aside, and then the dura (the sack that holds your spinal cord and fluid) will be opened. The neurosurgeon will find the filum amongst a bunch of nerve roots, and then cut it. I will be closed up, and the procedure will be done in an hour or so.

The neurosurgeon doing the procedure is very good at doing it in a very small space. The risks are low, but are primarly due to the fact that the dura is opened, exposing cerebral spinal fluid (CSF), and exposing nerve roots. The most common complication is a post-op CSF leak, which I hope we will avoid.

Read Part Two: History of my Struggles