Syringomyelia Support Group

Syringomyelia is a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs.

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Monte 02/04/2009

It is something that has beee
n bothering me for a while now.I have heard some of the people that have both SM and Chiari say that the SM is small but the NS told tham that It dosen`t grow.I don`t know about your Sm or your NS but the one that I had in Denver told me that they do get bigger(grow larger).So my question is how many have been told it won`t get any bigger and how many have been told that that they do get bigger? If they don`t then why do most of the time the NS wants to wait and see what happens later on instead of doing surgery right away? I just don`t get the two different views about it.What do you think.

deleted_user 02/05/2009

I was told it could get smaller or grow. For me I didn't have a ns say wait and see before doing my decompression surgery. There was only 6 weeks between diagnosis and surgery and prior to that I hadn't ever needed an mri so couldn't say if it had changed. I have had follow up mris scans though to see if there were any changes to the syrinx which initially there were

Monte 02/05/2009

Clea,it sounds like you had the same NS that I had.Well maybe not but when I was diagnosed it was 6 months until I had my surgery.Since then I have had 15 different MRI`s not counting the ones before the surgery.I guess they thought they saw something that needed to be watched.I have also had two myelograms to see if the CFS fluid is still flowing like it should.I think that one of these days I am going to turn into another Magneto(hopefully a good one).

deleted_user 02/05/2009

Bigger.

Monte 02/14/2009

I guess we are the only ones that are on here any more.So we have had a total of 2 gettint bigger and one that is both bigger and smaller.Are there any others that have been told something else or did they not tell you any thing one way or the other?I am just curious because of so many different opinions that I have gotten from different NS.

deleted_user 02/15/2009

I have to be different don't I!
The intial changes I said before was that one syrinx (the one that was a 1/3 the length of the spine) bercame smaller.

deleted_user 02/17/2009

Stay the same.
It is not that big to begin with.

deleted_user 02/18/2009

your syrinx can grow bigger , get smaller , completly disappear or stay the same size. Mine has stayed the same size for 10 yrs now.

deleted_user 04/01/2009

I was diagnosed in July of 2006 (MRI's done because of severity of symptoms). Since my first MRI mine has grown a little bit. The key point is: The average spinal cord is only about 10mm wide...so even a small amount of growth can make a BIG difference. I do know that syrinx's can shrink or even dissappear with certain procedures such as PFD or Tethered cord release. My NS still refers to mine as "stable" despite some growth. Don't know if that helps at all!

Hugs!

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