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.
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3 comments:
Great explanation of C.M. Did you end up having surgery? How did it go? Does Dr. E. do surgery? Was thinking of sending my son's records to Dr. E. Would you know if he then reviews and then assigns a surgeon (if indicated) or can you specifically request him.
Thanks for any info you can provide.
Wishing you well.
I can't comment on how to navigate to see a particular physician--as I am horrible at it. I would say that if you work through the staff of a physician (NS) that you know is an expert on the subject, that you should generally be treated very well even if you end up seeing one of their peers (e.g. in residence). The younger physicians often are on the cutting edge as they have studied the sciences so recently.
I'll also say that since writing the original post I've realized (and heard from NS's at medical conferences) that Cine MRI is a pretty blunt tool: It will show very obvious flow issues, but probably not diagnose borderline obstructions even if they can cause SM. Suregons who look at the cord in the OR often report seeing small arachnoid bands or adhesions--but the Cine MRI technology and ability of radiologists to consistently interpret the results is significantly lacking, meaning we can't identify such features.
Hi AJ, my SM story is very similar to yours in that I don't have CM. I do have a meningioma in my left temporal fossa. At 4mm, it's been deemed too small & insignificant by some. I also have a patch of linear foci in c 3-4 diagnosed as myelomalacia, scar tissue,& by a couple NS' as "nothing". Moving on, I have a congenital fusion at C 5-6. My syrinx is the entire length of my thoracic spine, long & thin. Too thin for surgery. I am 46, but an 80 year old can outrun me. After 7 years of "I don't knows" & "can't help yous", I just found out about cine MRI. I'm very hopeful that it can help lead me closer to something besides "can't help you" so I can get up & live a real life again. It is good to see someone else like me
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