SCI and Arnold Chiari Malformation

russianrob · 05-26-2012, 06:04 PM

Hello everyone, I was not sure where to post this.... This seemed to be the most suitable place. Does anyone else on the forums have both an SCI and an Arnold Chiari Malformation?

If you perhaps do I would curious to hear your story and experiences.

russianrob · 06-16-2012, 04:43 PM

Adding a comment to see if perhaps I get some comments and to refresh the post. Even if you have no information regarding the combo of SCI and Arnold Chiari Malformation--- if you have comments or experience with Chiari please reply.

SCI-Nurse · 06-16-2012, 04:47 PM

Not the combinaton with a traumatic SCI, but I have had clients who had both primary syringomyelia and ACM. There is an association between these, and often symptoms are not present until adulthood.

(KLD)

canuck · 06-16-2012, 05:16 PM

I have ACMII as a result of Spina Bifida and as a result of the ACMII I have hydrocphalus. Now shunt independent.

russianrob · 06-16-2012, 05:32 PM

Thank you.... I have/had Chiari Malformation II PRIOR to my SCI. It was surgery and some rehab. Nothing extreme since I was 20 at the time. Although I will not nor ever discount or downplay the intense and extreme symptoms people face with Arnold Chiari as an adult..... Not being T11, T12 incomplete I am keenly aware of everything and curious as to how it might or might not effect both sides of the spectrum......

aidan416 · 06-16-2012, 05:32 PM

I have a chiari malformation and SCI-but it a coincidence. Not sure I could offer you much

russianrob · 06-16-2012, 05:35 PM

KLD do you have any information and or people I might contact regarding the cases you are aware of ? I understand confidentiality and releases. If you could or might be willing to provide my contact information to them that would be great. Again, nothing commercial or advertising here.... Just research.

canuck · 06-16-2012, 06:10 PM

It's sort of a domino effect here the ACMII caused the hydocphalus which resulted in my visual perceptial, mental health, learning disabilities and coordination issues. Honestly I would give my right leg to be "a run of the mill para"

~Lin · 06-16-2012, 07:11 PM

Interesting. I've run in to a bunch of people who have Chiari related to Ehlers Danlos, I'm not sure if any have had SCI as a result. You said research, is this professional or personal research? I could post to the EDS email group asking if anyone with Chiari have had SCI as well if you'd like.

05-26-2012, 06:04 PM	#1
russianrob Senior Member Join Date: May 2012 Posts: 286	SCI and Arnold Chiari Malformation Hello everyone, I was not sure where to post this.... This seemed to be the most suitable place. Does anyone else on the forums have both an SCI and an Arnold Chiari Malformation? If you perhaps do I would curious to hear your story and experiences. __________________ Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

06-16-2012, 04:43 PM	#2
russianrob Senior Member Join Date: May 2012 Posts: 286	Adding a comment to see if perhaps I get some comments and to refresh the post. Even if you have no information regarding the combo of SCI and Arnold Chiari Malformation--- if you have comments or experience with Chiari please reply. __________________ Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

06-16-2012, 05:32 PM	#5
russianrob Senior Member Join Date: May 2012 Posts: 286	Thank you.... I have/had Chiari Malformation II PRIOR to my SCI. It was surgery and some rehab. Nothing extreme since I was 20 at the time. Although I will not nor ever discount or downplay the intense and extreme symptoms people face with Arnold Chiari as an adult..... Not being T11, T12 incomplete I am keenly aware of everything and curious as to how it might or might not effect both sides of the spectrum...... __________________ Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

06-16-2012, 05:32 PM	#6
aidan416 Senior Member Join Date: Oct 2007 Location: MA Posts: 240	I have a chiari malformation and SCI-but it a coincidence. Not sure I could offer you much __________________ "Nothing ventured, nothing gained." - My Grammie

06-16-2012, 05:35 PM	#7
russianrob Senior Member Join Date: May 2012 Posts: 286	KLD do you have any information and or people I might contact regarding the cases you are aware of ? I understand confidentiality and releases. If you could or might be willing to provide my contact information to them that would be great. Again, nothing commercial or advertising here.... Just research. __________________ Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

06-16-2012, 04:47 PM	#3
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,304	Not the combinaton with a traumatic SCI, but I have had clients who had both primary syringomyelia and ACM. There is an association between these, and often symptoms are not present until adulthood. (KLD)

06-16-2012, 05:16 PM	#4
canuck Senior Member Join Date: Mar 2003 Location: BC Canada Posts: 2,575	I have ACMII as a result of Spina Bifida and as a result of the ACMII I have hydrocphalus. Now shunt independent.

06-16-2012, 06:10 PM	#8
canuck Senior Member Join Date: Mar 2003 Location: BC Canada Posts: 2,575	It's sort of a domino effect here the ACMII caused the hydocphalus which resulted in my visual perceptial, mental health, learning disabilities and coordination issues. Honestly I would give my right leg to be "a run of the mill para"

06-16-2012, 07:11 PM	#9
~Lin Senior Member Join Date: Nov 2011 Location: Indianapolis, IN Posts: 1,823	Interesting. I've run in to a bunch of people who have Chiari related to Ehlers Danlos, I'm not sure if any have had SCI as a result. You said research, is this professional or personal research? I could post to the EDS email group asking if anyone with Chiari have had SCI as well if you'd like. __________________ I am not paralyzed. I have a genetic connective tissue disorder called EDS with neuro complications.

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