Highlights from my Spine MRIs

Click on images to enlarge.



First up, we have a lovely (axial T2-weighted) cervical spine MRI image showing my cervical syrinx. The donut looking thing in the middle is my spinal cord. The hole in the middle is the syrinx. The syrinx is a gap filled with cerebral-spinal fluid (CSF) which has been forced into my spinal cord by some sinister and yet unidentified force. These first couple of images are axial slices. That means they're 2-d slices made in the plane parallel to the floor if we were standing up. To simplify, it's the same cross section you'd see if you chopped someone's head clean off at the neck.






Next on our lovely slide show we have another axial slice, this time lower in the thoracic spine. Again you can see a white dot in the center of my spinal cord. This is my long-skinny thoracic (middle back) syrinx which runs about from T4 through T12.




Now on to the sagittal images. These slices are taken in the sagittal plane, which is what you'd see if you sliced someone clean in half from head to toe. This is a (T2) MRI of my cspine again. This time you can see the dark spinal cord coming down from the brain (to the right of the vertebrae and discs). You'll notice the white bubble in the center of it around C4-C6. That's the same syrinx that looks like a donut in the first picture. This talk of donuts is making me hungry.





Next we have a sagittal (T2) mri of my thoracic spine. Look for the thin white line in the dark spinal cord. When I first heard I had another syrinx from T4-T12, I was upset; that sounds really long. I felt a little bit better when I saw that it's fairly thin. It does get a little bit wider as it settles around T12, but it's hard to find in the MRI images.




This is a sagittal image (T2) from my thoracic and lumbar spine (lower back). Of note are the white line in the spinal cord at the top, and the seen-better-days L5-S1 disc at the bottom. It's turning black and it should be white; it's degenerative and bulging. Many people with SM experience multiple DDD (degenerative disc disease) and disc herniations. My guess is that it is from muscle spacticity. My paraspinal muscles and neck muscles just don't relax. They are way to tight.


Finally, here is a link to a movie which shows a sequence of axial cervical spine (neck) images. It moves from my upper back towards my head, one image per second.

t2-ax-cspine.avi

(Right-click on the link, choose "Save As", and save it to your Desktop. Then, open it from there.)

Enjoy. This stuff is putting me to sleep and giving me a headache. Good night. Zzzzzzz....

Starting a Support Group. Who, Me?

Today I explain why I'm starting a support group, something I've never considered before.

Dealing with Syringomyelia over the last couple of years has had its difficult moments. I've gone from being an accomplished hiker and mountain biker to struggling to walk at times. I used to take my health and ability to concentrate for granted. Now I'm thankful whenever I can move or concentrate on something without the distraction of pain.

I do not suffer without support. I am so fortunate to have married the girl of my dreams last year, expanding my family with more people who care about me. I am so thankful for all my friends and family; they are a wonderful support system for me.

Why, then, is it difficult to talk to them about my condition? Why would I ever need more support than what I have now?

For one thing, it is hard to explain the cereberal spinal fluid dynamics of hydromyelia to someone when they just want to know why you're not going hiking like you usually would. A simplified explanation often falls short. "Just take some ibuprofen if your neck hurts," or "come on, tough it out," are likely to be responses. My friends and family care about me, but I need to explain the predicament I'm in so they can understand. If I say "I have a disease and it's bad so I can't do stuff," that only piques curiosity.

To be honest, I do not mind explaining my condition to people. In fact, I need to vent about it on a regular basis. I start to feel a little alienated, however, when I explain what is wrong with me. Suddenly they understand, and that makes me different. It is hard to explain what I mean.

I also think about the people I talk to about this. My wonderful wife takes the brunt of my complaints and worries with stride, but it is hard on her. She feels bad because she cannot solve my problems. She cares about me deeply and when I talk of pain, she feels it too. When she is sad, it makes me sad. You can see how this could become a cycle of negative moods.

To break this cycle, to help those I love, and to help myself, I've decided to start a support group. I will volunteer my time to help people in my area with syringomyelia and chiari malformation meet and talk. Those who suffer need extraordinary support, and I believe they can help keep balance in their own social lives by getting together.

I threw up a web site for the new Syringomyelia and Chiari Northwest Support Group today, let me know what you think.

A Neurosurgeon Who Knows What a Cine MRI Is

On Monday I saw a new neurosurgeon, Dr. V, at Harborview/UW Spine. Dr. V is a younger physician who studied with Dr. E, a top expert in Chiari malformations and hydromyelia (a.k.a. syringomyelia). It was refreshing to talk with a neurosurgeon who was informed on the latest research in my condition.

The first neurosurgeon I saw back in July of 2005, however, was not as familiar with it. Dr. S, at Swedish Hospital, basically said that my SM could be worse, but it was not curable. He said this without looking at my brain MRI (which Dr. Y's office did not forward to him). He suggested I get a full spine MRI in six months or so, and we called it a day.

Not curable, huh? If I wasn't such a self-preserving geek I may have taken that as the gospel and moved on.

Recent wisdom on syringomyelia (SM), however, indicates that a syrinx does not usually occur on its own; there typically is another condition which forces the cerebrospinal fluid (CSF) into the spinal cord. Furthermore, if you remove the primary condition, the syrinx may resolve or shrink. About 90% of the cases of SM are secondary to an Chiari malformation (CM), where the lower brain plugs the base of the skull like a cork, forcing CSF into the spinal cord.

Consistant with my luck, I have the rarer form of SM. My MRIs do not show a Chiari malformation. There does not appear to be a lack of space at the cervico-medullary junction. I do, however, have some of the symptoms of CM. CM can affect things innervated not by the spinal cord, but by one of the crainial nerves. This is due to the pressure and compression parts of the brain are subjected to with CM. Since my syrinx only goes as high as C5, it should not be causing some of my symptoms, such as nystagmus (twitching eyeball), or the numb patch in the back of my throat, or the difficulty swallowing, each of which come and go. These symptoms are exascerbated by bending over (increasing intracranial pressure). I also get "pressure" headaches in the base of my skull, temples, and so on.

I had a couple of decent head injuries (head hits metal post and head hits concrete, don't try at home). These can cause a small bleed in the brain, which is known to cause scarring and arachnoiditis. Basically, my body would respond to the trauma by growing new membranes or scar tissue which attach to the brain. This tissue can block CSF flow.

Knowing all this, and reading some of the latest research on CM and SM, I began to think I needed to have a CSF flow study to see if we can find any CSF flow obstructions. Cine MRI, a technology developed to visualize blood flow through the heart, is being applied to diagnose syringomyelia.

When I mentioned Cine MRI to my first neurosurgeon, Mr. S, he indicated that he'd heard about it, but remained pessimistic. From the little I know, performing and interpreting the results of a Cine MRI makes reading a regular MRI seem easy (which it is not). I imagine Mr. S just didn't have personal experience with Cine MRIs.

As I worked through the admissions and referral process to get into UW/Harborview Spine, I hoped that they had a neurosurgeon who knew how to use Cine MRI to analyze CSF flow. When Dr. V suggested I do a flow study, without me even mentioning it, I was very happy.

Neurontin (gabapentin) for Pain and Spacticity

One of the first things we did when I started seeing my new neurologist (Dr. D) was to reevaluate any medications I was taking and see if we could improve the management of my pain and muscle tightness (spacticity). At the time, I was taking minimum-dose Paxil (10mg/day), and Vicodin. I was taking the Paxil because I still had some left from my old primary care physician (PCP) Dr. M, who thought my strange neurological symptoms may be due to depression. The Paxil never did help my pain and neurological symptoms. It may have helped me sleep and kept me happier as I dealt with chronic pain, but it never served its intended purpose. We decided I should quit taking it. Second, we looked at my use of Vicodin to manage pain. I complained about the side effects of Vicodin. I was taking it daily for pain, but would wait until I got home from work if at all possible. I would take the lowest dosage possible, but I still experienced grogginess, an exascerbation of my weakness symptoms, and feelings of depression. Being a narcotic, Vicodin tended to make me feel like crap mood-wise if I took it for very long. It really was not the right drug for the job.

Dr. D prescribed Neurontin for me, and I initially took 300mg once and then twice a day. At first I felt euphoric and woozy, but those side-effects wore off within 3-4 days. As I got used to Neurontin, I found that it was much better at managing my pain, and caused fewer side effects compared to Vicodin. I quit taking Vicodin regularly; my pain level was usually tolerable.

While I was taking Neurontin (300mg) only twice a day, I noticed my pain would usually come back in the two to three hours before my next dose. I started taking Vicodin again occasionally after work. I also was still having problems with spacticity. Even though I spent over an hour a day stretching, and had a stand-up desk at work, the back and joint pain from my ever-tightening muscles was a serious problem.

At my next follow-up appointment with Dr. D a month later, I told her how I was doing. We decided that I should start taking the Neurontin three times a day for pain. I mentioned I was having a hard time with spacticity still, and she prescribed a short-term muscle relaxant for me to try out (forget the name now, will fill in later).

Over the next week I started taking the muscle relaxant before bed and increased my neurontin dosage to 300mg three times a day. Although I'd be a little light-headed at work in the morning at first, I had the best week I've had for a long time. I almost felt normal for most of the day. It was wonderful. I sent Dr. D a memo thanking her for listening to me and making a big difference in my symptoms. As my body became used to the increased dose of neurontin, and as I quit taking the muscle relaxant, some of the relief I had faded. I continue to do well, however. I am more productive at work, and happier at home.