Arnold-Chiari Malformation Member Introductions

#21

I have this condition, have had surgey, and now return of soem old symptoms and new ones as well.

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#22

Hi, I have a 2yo son who was dx with this about a month ago and has had surgery alread- looking for more info adn support! :slight_smile:

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#23

I’ve been suffering from ACM while working and going to school full-time. I want some comfort in the fact that I’m not alone.

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#24

Hello, I’m 28 diagnosed with ACM1 4 years ago. 1.2cm
No surgery looking to talk to anyone dealing with the same and how you get thru the days. Compare tatics and meds that work.

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#25

I’m Diane, and I’m 18 years old. I was diagnosed in May 2006 and I had decompression surgery in November. Since then my symptoms have come back and they are getting worse… i just want some support.

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#26

My husband who is 28, was recently in the last 6 months diagnosted with Arnold Chiari Malformation. Any suggestions, the doctors haven’t really told us anything, because they don’t know much about it. Please help.

Thank you. : )

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#27

jsut want to meet others with the condition and give support to

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#28

 

Hi!  I decided to join this group for a couple of reasons.  First of all, I was diagnosed with ACM in '86 and had surgery for it shortly thereafter.  I lived well and healthy for almost ten years until a car accident turned my life upside down!  Within a year or so, I began noticing all kinds of different things -- things I would later attribute to Fibromyalgia.

As is the case with Fibromyalgia (FMS), it is difficult to diagnose, but I was lucky -- if you can call getting a diagnosis of Hypothyroidism 'lucky'.  Because Hypothyroidism can be proved with a simple blood test, my doctor lumped me into the FMS 'catch-all' diagnosis after not being able to find anything else definitive.  With the exception of the Chiari, I was never sick so even though they tested me for the usual suspects (Lupus, MS and the like), it was the Hypothyroidism that locked in the FMS diagnosis I live with today.

Secondly, I am trying to follow other people who have or had both FMS and ACM because I think the two illnesses are linked somehow.  There are some doctors who believe this as well, but trying to prove it seems even more difficult than proving FMS alone!  A lot of FMS patients who heard of the possibility that the surgery we go through for Chiari can help diminish or rid them all together of their FMS symptoms.  The doctors that don't follow this theory don't like the fact that their FMS patients are requesting this surgery.  Frankly, I wouldn't wish the surgery I went through on my worst enemy, so I almost understand those doctors.

Having said all that, however, unlike those FMS patients, I already had Chiari, so who knows that I couldn't benefit from the surgery in this context?  Ever since one of the nurses I've dealt with since FMS gave me a copy of the TV news report about the possible connection between FMS and ACM, I've been trying to research the possibilities myself and meeting people like you guys along the way.  If you are reading this and you, too, have or have had both of these illnesses, please feel free to send me a Private Message.  I'd LOVE to discuss all this with you.

Finally, the last reason I joined this group was because I've been noticing more and more of you who either just got the diagnosis and don't know which way to turn or you've already had surgery scheduled and have questions that I thought I may be able to answer for you.  It's been nearly 21 years since my surgery.  The hospital released me Labor Day weekend in '86 with no words of wisdom except "Have a nice life!", a prescription I couldn't fill in my state and a lovely new haircut that would follow me to my wedding day on December 31st just four months later, but I still have a lot to share if you need someone to talk to before your surgery.

I'll be here for you if you need an ear (or an eye, actually) so just look me up, OK?  In the interim, I hope you're all doing well and I'm glad to be here for you when you're ready to talk, OK?  'Till then....

SBernheart  [;}]

 

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#29

hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.

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pinned #30
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