How many people suffer from ACM

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Postby Gracie Rose » Wed Jun 27, 2007 12:54 am


I have ACM/EDS/had Tethered Spinal Cord. Along with EDS goes endocrine problems, autonomic issues(heart rate issues, bp issues),
joint pain, flexibility in joints that is also found at the cranio-cervical junction(where your head meets your spine).

We have 5 children with ACM/EDS and only one of those has SM. All of them have EDS.

Gracie Rose
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Postby gncrzy3 » Wed Jun 27, 2007 2:00 am

I have sm and basilar invagination
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Location: western PA

Postby socialdkitty » Wed Jun 27, 2007 7:02 am

I have SM (C6-C7). CM does not show up on my MRI but I have more CM symptoms then SM.
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Postby hoz74 » Wed Jun 27, 2007 9:04 am

I have CM, had the surgery, the cm is herniating again a little, just found out I have scoliosis, and they think I have sm, but due to accident with daughter I havent had time to have a mri on thoracic spine yet and it may be quite a while for that. Kids come first. :D
ACM decompression surgery sept 06
Lord Keep your arm around my shoulders
and your hand over my mouth
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Location: Ohio

Postby Fraggle Nan » Wed Jun 27, 2007 9:05 am


As for me I have:

TCS-surgery 7/24/07
Spinal stenosis

Fraggle Nan
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Postby kittb » Wed Jun 27, 2007 9:30 am

All I have is SM from my L-1 to my T-3(that I've been dx). It's still a pain in the....back!
If you ever lose yourself, call on me and we'll be lost together-Kitt
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Location: Kingston, Ontario

Postby daynthelife » Wed Jun 27, 2007 2:36 pm

Hi Jerry...oops I read it wrong too...I have post traumatic syringomyelia of the cervical spine. No CM. Thanks Jerry...great question.
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Postby CrazyCat » Wed Jun 27, 2007 8:42 pm

Hey Jerry!
I was diagnosed with ACM 2005. It was not on any previous MRI films. I was diagnosed with TC in 2003. I would bet my life I have EDS and SM but I am sure my visit to TCI will confirm that. :)
~Be who you are and say how you feel, because the people who matter don't mind and the people who mind don't matter.~
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Postby keggler » Wed Jun 27, 2007 9:01 pm

Thanks to the ones that have answered,and how about the rest of you...Don't be shy....My ACM was dx in surgury yet....

Later...Jerry in Carolina...
"You are what you eat----and-----You are what you think"

"Be Good To Yourself"
CM1-S/M-Basilar Invagination
Posts: 395
Joined: Wed May 16, 2007 7:38 pm
Location: South Carolina

How many people suffer with ACM?

Postby melissajohnson1968 » Wed Jun 27, 2007 11:46 pm

I have/had CM1 a 12.2mm herniation for which I had surgery for Nov 2006. I also have/had a syrinx at the C7, 4mm.

Is it considered had if you had the surgery? But I am now experiencing muscle problems that have brought back the headaches and neck/back/spine pain. Am scheduled to go to a pain managment doc soon.

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Location: Sheldon, Iowa

accounted for

Postby prism » Thu Jun 28, 2007 10:11 am

just to be a part of the count i'll comment.

i was told i have chiari 1- - hoping to get to TCI for the eval. on cm1, tc, and sm. to sort through what is and what isn't causing physical degeneration.
i am very symptomatic, but really do not want these conditions.
eds. on my count is a complicating factor, heart issues, nes. naturally, many, many unexplained problems.

:? prism

Postby sammyj » Thu Jun 28, 2007 11:12 am

I have been diagnosed with ACM but, have not yet have my full spine MRI. I do have scoliosis and many TC symptoms. Hoping to get to the TCI in March with my 8 yr old son who also has ACM/SM when my insurance co. gets over my "pre-existing condition" status :roll:


Postby kirafaye » Fri Jun 29, 2007 5:33 am

Chiari 1 (though some reports say 2) - 2 decompressions
Syringomyelia c2-t10
basilar invagination - new one for the year :(
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Joined: Fri Jun 22, 2007 11:45 pm

Postby birdlover3 » Fri Jun 29, 2007 6:57 am

I’ve been diagnosed with both.

Jesus gives hope.
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Postby mrsariel » Fri Jun 29, 2007 7:59 pm

Diagnosed with CM 1 7mm January 2007.
Having some luck with Diamox.
Still trying to navigate what I do to make my symptoms act up.
CM 7mm diagnosed 12/06.
Tethered Cord diagnosed 10/07 @ TCI
TC surgery 5/13/08
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Joined: Wed May 16, 2007 1:46 pm
Location: Connecticut


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