New/syrinx on conus medullaris

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New/syrinx on conus medullaris

Postby Judi » Mon Mar 05, 2012 1:16 pm

I am so glad to finally find "others" who are experiencing the same issues. My syrinx was found when I thought I was having a heart attack. I have always had scoliosis, and never really let it stop me from doing anything. After having experienced the walloping pain the syrinx can cause, I am a whole lot more cautious. I have three hemangiomas that are symptomatic, 4 bulging discs, the scoliosis at 37 degrees in an s curve and the syrinx. It is the syrinx pain that drops me to my knees. Does anyone else have this? And I have been tested repeatedly for CM. I actually had one very prestigious surgeon tell me that without CM, I wasn't "interesting" to him. After driving a total of 8 hours, I felt I had been treated badly. So, I am looking to those who have SM to guide me with these weird, weird symptoms.
Thank you,
Judi
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Re: New/syrinx on conus medullaris

Postby gunflint » Mon Mar 05, 2012 2:04 pm

Welcome to the forum. Yes, neurosurgeons can be awfully full of themselves. I would write a little more but I have a pt appointment and I'm trying to beat an ice storm back home.
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Re: New/syrinx on conus medullaris

Postby karenb » Tue Mar 06, 2012 3:45 am

Hi Judi,

Welcome to the club nobody wants to be part of! We're glad you found us!

I was dx'd with a syrinx after moving to New Mexico - they'd already tried for 10 years to figure out what I had, but kept going down the muscular dystrophy/reflex sympathetic dystrophy/nerve entrapment route.

I also have scoliosis in the area where my syrinx is - nobody ever told me the degree (but I'll find out soon after a chest X-Ray and another MD visit). My pain was absolutely debilitating at first - as the nerve damage gradually spread, it settled down some, but there's still plenty to go around.

If you're going to bother with a NS, make sure he specializes in SM (once Chiari has been ruled out, don't worry about whether he deals with Chiari - if he's Chiari-only, you're not within his little "smokestack" of the medical profession). One consolation - at least you only drove 8 hours to get this helpful information. I ended up making 9 separate 450-mile trips (with all the associated overnight bills, since my SM puts me in enough pain that I can only drive an hour at a time) before being told the very helpful fact that "we don't specialize in this, but come back and see us again if your symptoms change"!

So... we'll do our best to guide you with your symptoms... but sometimes all we can offer is a sympathetic ear or reassurance that you're really not going crazy.

Best wishes,

Karen
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