I know this maybe a simply answered question, but is there really any difference between Arnold-Chiari Malformation & Chiari Malformation I went to a meeting at a job rehabilitation place this week and the lady I talked to was asking me about my condition. On the paper I had filled out, I put Arnold-Chiari Malformation in the diagnosis part and the lady asked me what that was and when I explained it, she said, "oh, I have heard of Chiari Malformation, but not Arnold-Chiari, what is that?"
I thought it was interesting that she had heard of one but not the other. Anyway made me start thinking and wondering if there was anything different or if it is just a name.
Not that I know of.... but if you just say "Chiari" (even to doctors) they may assume you mean Budd-Chiari and they'll go look it up on wikipedia and come back and tell you that that's not your problem. That happened to me in the ER once while I was having a panic attack and could barely speak. I wanted to slap that guy so badly haha.
Anyways, No, Arnold-Chiari Malformation (ACM) and Chiari-Malformation (CM) are the same thing :)
I thought they were the same, but it was just one of those things that make you go huh?
Hi Susan,
It sounds like you need to stop going to this clinic! There are other very skilled NS's specializing in CM and related disorders that can help you. And given that you have had such an amazingly difficult time, I'm sure they wouldn't hesitate to help you. I'm also certain there are some people on this site that can help you find the right doctors and point you in the right direction.
If you happen to be in a learning kind of mood, here is a link with a lot of helpful explanations:
http://www.chiariinstitute.com/Videos/index.html
Click on "Patient Education" in the bottom right.
I can't believe they didn't look at your whole spine :(
With spina bifida in the lower regions it is a whole different ball game. Whoever did surgery on you should be held accountable and make sure that you get the help you need! I wish you the best of luck and lots of love <3
ps: you should start a new discussion about your case because this got way off topic and there's a lot to talk about, and I think it would draw some much needed attention your way :)
Susan J said:
I would really like to know this. I was diagnosised in November 2009 and had my decompression surgery in February 2010. I had complications and developed a psuedmeningocele, diagnosis with psuedo tumor cererbri, hydrocephelus, was fitted with a shunt, had a shunt malfunction/revision, and then had the decompression revision to fix the CSF leak and turn off the shunt. That brings us to March 2011. I have had 3 different NS, but from the same clinic. I recently saw the third NS and they set me up with an online account that I can look up information about me and ask questions to the doctor. They have a section for diagnosis. The first NS did put anything down. for 2010. My diagnostic history according their records starts in 2011 and the first diagnosis was complications of the shunt, then a disorder of the menginges, then headache, then neck pain and now with diagnosis date of May 2012 is Arnold Chiari Malformation with Spina Bifida and hydrocephelus. The NS number 2 and 3 have both ruled out psuedo tumor cerebri. Neither believe that it was every an issue.
No one has ever used the word Spina Bifida with me. I've never had the lower lumbar section look at by any doctor.I've only had MRIs of my brain and C-spine. I went back are read my MRI reports. I had obstructive hydrocephelus develop after my decompression surgery. There was no evidence of it prior to my decompression surgery. NS number 2 was the best and we had that conversation when he turned the shunt off that NS number 1 put in. He saw no evidence of hydrocephelus before my decompression surgery. I thought I was told by the first NS that I had CM type 1, but now I don't know.
My mom has gone to all my doctors appoinmtents, but I can't/won't ask her what she remembers. The CM experience has almost been harder on her than me. I was born when she was 41. She wasn't supposed to be able to have any more kids. She was into her second trimester before she was told she was pregnant. (I have 3 siblings that are 19, 16, and 14 years older than I am yet I have a nephew that is only 4 1/2 years younger than I). I was the big suprise. She guilts herself on not knowing she was pregnant that first trimester. My mom has tremendous guilt that my health problems are her fault. I have a niece that also has been diagnosised. I have used her for the argument of heriditary proof, and not late in life/Spina Bifida proof. If I use the word Spina Bifida that will open that flood gate of guilt again.
I am curious, but I don't know if I need to find out if I have CM type 1 or 2. I really doubt the type 2. I thought that this diagnosis generally comes in childhood. I was 29 when I was diagnosised and decompressed. I just laugh at the order the clinic has everything listed. The CM came last.... this is a chicken before the egg type topic.
What do you guys think? Should I ask more questions?
Susan J
Arnold–Chiari malformation, or often simply Chiari malformation
Susan, tell your your mom not to feel guilty at all. My mom didn't know she was pregnant with me until she was 5 months pregnant either, which if you tell your mom that it would just confirm her guilt, but my mom was in her early 20's when she had me. I had a head injury when I was about 14 months old and that is when all of my "minor" symptoms started. And to add to that, we are started to put the puzzle pieces together for my brother who we think has CM also. So tell her that it's not her fault. I truly do not believe her not knowing she was pregnant or having you so late in life has anything to do with you having CM. But if it makes you feel any better, my mom feels guilty that there should have been more she should have done to get answers to all my medical problems growing up instead of settling for what the so called professionals told her.
Susan J said:
I would really like to know this. I was diagnosised in November 2009 and had my decompression surgery in February 2010. I had complications and developed a psuedmeningocele, diagnosis with psuedo tumor cererbri, hydrocephelus, was fitted with a shunt, had a shunt malfunction/revision, and then had the decompression revision to fix the CSF leak and turn off the shunt. That brings us to March 2011. I have had 3 different NS, but from the same clinic. I recently saw the third NS and they set me up with an online account that I can look up information about me and ask questions to the doctor. They have a section for diagnosis. The first NS did put anything down. for 2010. My diagnostic history according their records starts in 2011 and the first diagnosis was complications of the shunt, then a disorder of the menginges, then headache, then neck pain and now with diagnosis date of May 2012 is Arnold Chiari Malformation with Spina Bifida and hydrocephelus. The NS number 2 and 3 have both ruled out psuedo tumor cerebri. Neither believe that it was every an issue.
No one has ever used the word Spina Bifida with me. I've never had the lower lumbar section look at by any doctor.I've only had MRIs of my brain and C-spine. I went back are read my MRI reports. I had obstructive hydrocephelus develop after my decompression surgery. There was no evidence of it prior to my decompression surgery. NS number 2 was the best and we had that conversation when he turned the shunt off that NS number 1 put in. He saw no evidence of hydrocephelus before my decompression surgery. I thought I was told by the first NS that I had CM type 1, but now I don't know.
My mom has gone to all my doctors appoinmtents, but I can't/won't ask her what she remembers. The CM experience has almost been harder on her than me. I was born when she was 41. She wasn't supposed to be able to have any more kids. She was into her second trimester before she was told she was pregnant. (I have 3 siblings that are 19, 16, and 14 years older than I am yet I have a nephew that is only 4 1/2 years younger than I). I was the big suprise. She guilts herself on not knowing she was pregnant that first trimester. My mom has tremendous guilt that my health problems are her fault. I have a niece that also has been diagnosised. I have used her for the argument of heriditary proof, and not late in life/Spina Bifida proof. If I use the word Spina Bifida that will open that flood gate of guilt again.
I am curious, but I don't know if I need to find out if I have CM type 1 or 2. I really doubt the type 2. I thought that this diagnosis generally comes in childhood. I was 29 when I was diagnosised and decompressed. I just laugh at the order the clinic has everything listed. The CM came last.... this is a chicken before the egg type topic.
What do you guys think? Should I ask more questions?
Susan J