chiari

[yummylikeme]

i have a chiari i am in so much pain all day everyday the older i get the more pain .i just like to fine someone that is in my shoe . knowone understand how  i feel my family is trying to fine support for thier mom i have surgery on this thursday has anyone had the surgery done  i would like to know  how it went . we all need to get to together and do walk  to rise money to help people like us thier is even little guys out thier as will . but i would like to talk to someone for support  would like to fine answer for this

[selmaS]

  Hi and welcome to the Chiari forum

Yes this site is active the thread you posted to is an old thread and it is not a active thread.....

How can we help you ?

[imhisjoy]

Is this site still active

[hlwampler]

I had my surgery April 10, 2012. I'm lucky though...going in I already knew everything and everyone who would be involved with my surgery. I actually work in a hospital on their neurosurgiacl unit. The doctors who performed the surgery....well I sit and chat with them every weekend when they're rounding on patients.

It's terrifying. Even knowing everything that was going to happen I still cried just because I had never had surgery before. But...everything was alright. It hurt. I won't lie about that. I was laid up in bed for about 2 1/2 weeks. Up walking around after that and back to work by 8. The biggest thing that helped me were the pain meds and LOADS of sleep.

[frankie_rush]

Hello and welcome,

I had my surgery July 25 2012 and would have it again.  You can read my journal.  Cause I went through alot more,  Hope you the best,

[selmaS]

  Good it seems ur Dr is looking to rule out ALL things that can cause similar symptoms.....

Make sure they also look to conditions related to Chiari as well......

  Keep us updated on how u r doing : )

[Victoriamaria87]

Just had my dr with my neuro. We r trying to rule out MSG cluster headaches. So my next appt. is aug 12 and if the new diet ( that feels like I can only eat ice cubes and drink water) doesn't work then on to the chiari subject we go. I am pretty much upset because I didn't have these problems before ( when I was 247 lbs) but now I do. For the last 3 yrs and bad for the last 6 moths. Now I am 140 lbs and I feel like crap. I had labs done and I find out what my vitamin levels are, to rule those out as a problem too.

[selmaS]

  Hi and welcome to the Chiari forum.

Many of us have gotten the run around with the condition and DX....many Drs feel it is an incidental finding and nothing to be concerned with,...so many of us like u have been to many Drs trying to find one that believes there is something wrong and it IS in our head just not the way they insinuate...

Once u have a Dr that does all the testing to rule out related conditions and u know what is going on and how ur chiari is affecting ur overall health...u can look @ treatment.

What testing have u had so far?

[Victoriamaria87]

I am new to this cm thing. I was diagnosed in 2008 and it was never spoke of again until 3 months ago. I am now in constant pain and I am having a hard time coping. It seems no one understands. Now surgery is in my future and I am terrified. It took 3 dr. To find one that didn't think I was a hypochondriac. I NEED people that understand what I am going through.

[selmaS]

  HI and welcome to the Chiari forum.

Thank you so much for your positive experience...I am 2.5 yrs post op and my chiari surgery is a success as well.

I will caution u, no matter how great u feel now, take it slow and allow ur body to heal, u can overdo it and cause a set back to ur recovery....

  I am so happy u r doing well...and I hope u continue to post updates on ur journey. : )

   "selma"

[ANewPerson]

Prior to my surgery I was scared to death reading all the posts reporting bad outcomes. I feel truly sorry for those who continue to suffer. I think most people who go on to do well are less likely to return to forums to say "I'm doing great". So I'm writing to say I have my life back!!  I have "some" neck pain 8 weeks post-op but my gag reflex is back, my balance has returned and I feel fantastic. My best friend said she feels as though "she has her friend back". I credit my recovery to God, and to being in excellent health prior to surgery. I never had headaches or neck pain or medical problems before Chiari so I was a very good candidate. Anyway, just wanted people who are surfing to find other people's experiences with Chiari to know that at least one person has had a fantastic, life-restoring experience.  Best wishes for all of us.

[4XShuntfailure]

So you really would do it all over again????  Because of all the sites I've seen and read, you are the first to say so!!! I've been dragging my feet because I'm a 4 time shunt surgery failure who needs decompression surgery and I'm scared to death to go back under the knife again because everything I read  from others seems to either be a "temporary fix" or "unsuccessful" so I hesitate to go through it all for NOT???  I've used up all of my sick and vacation time over last summer/fall during my shunt surgeries so I don't have much time built back up.  I'm nervous to have to go back out again.  I realize we're all different and there are NO guarantees but - WOW - I'd sure like to hear a few more SUCCESS stories out there...!!!

[dieselann]

Ihave had ACM for 25 years. I am 49. 13 years ago I had decopression surgery and it was the best thing ever. I was 27 days flat on my back at home but I would do it again if I had too.

[(Not so) Spunky]

I had  my surgery on May 20th- I will not lie- IT HURTS!! The first 24-48 hours are the worst, but the it gets better. I developed a CSF leak that was actually worse than the surgery, and I will pray for you that that doesn't happen to you. I am now almost 1 month post op, and I feel pretty good. I am a stay at home mom of 4, and if the kids get out of hand, I do get headaches, but if I can remain "at peace", I'm fine. I found the hardest and most painful(other than the 2 days after surgery) to be neck stiffness. Ask for a muscle relaxer if they don't offer you one. It will be a god-send! I still wake up hurting from the stiffness every morning, but it's getting better. Mostly because I found a comfortable sleeping position. Stay strong- it will get better- and feel free to PM me when you're up to it. Good luck!