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  • Chiari -ACM (anyone)

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    Old 11-24-2004, 09:13 PM   #1
    kirafaye
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    Chiari -ACM (anyone)

    Well I moved from the MS side of the board to this one and rare in hope of finding someone else who has this as I was diagnosed yesterday.
    what is it?
    Also known as Arnold-Chiari Malformation or ACM, this is a very rare structural condition affecting the cerebellum. Essentially there is extra cerebellum crowding the outlet of the brainstem/spinal cord from the skull on its way to the spinal canal. This crowding will commonly lead to severe headaches, neck pain, loss of balance, tingling in the arms and/or legs, stiffness, and less often will cause problems such as chronic coughing, difficulties with swallowing, and choking. Often the symptoms are made worse with straining.

    Untreated, the chronic crowding of the brainstem and spinal cord can lead to very serious consequences including paralysis. In addition they can lead to the development of syrinxes which may further injure the patients spinal cord and function. When the diagnosis is suspected the study of choice is an MRI scan. These malformations are very difficult to see on CT scans and impossible to see on plain x-rays.

    There are many ways to treat Chiari malformations, but all require surgery. The basic operation is one of uncrowding the area at the base of the cerebellum where it is pushing against the brainstem and spinal cord. This is done by removing a portion of bone at the base of the skull deep to the neck muscles as well as often removing a part of the back of the first and occasionally additional spinal column segments.

    I personnaly had this fro 6 yrs before diagnosis and have alot of symptoms aroudn the same as MS, I lsot feelign down my right side and have extreme pan in my right arm, kidna paralysed down right side when I'm having a bad day, extreme headaches, flickering eyes I also from the chiari have syrinx's in the spine, which I am not toally sure about so can;t mention any info sorry, anyone else been through this and can tell me about the surgery?

     
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    Old 12-03-2004, 05:06 AM   #2
    kirafaye
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    Re: Chiari -ACM (anyone)

    thanks anseay uv been a true help through all of this! I'll take a lok now.

     
    Old 12-03-2004, 05:07 AM   #3
    kirafaye
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    Re: Chiari -ACM (anyone)

    My nuero really didn;t know much I foudn more via the net, but I think even know there are lots of people on th net I heard qoute that liek 200,000 americans have it whch is pretty small since they have MILLIONS of people.....

     
    Old 12-03-2004, 08:24 AM   #4
    anseay
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    Re: Chiari -ACM (anyone)

    The board that I feel into was congenital defect, It listed hospitals all over austraila. That what suprised me so much and on these boards you can only give so much help before your banded. go google to fing it the easy way. maybe it will get you some info by searching each one of those sight for some info. It sure would be closer to home! Yeah I've been reading up on one of the older posting and there was a women police office who had a number of surguries for chiari and it sounded positive that she would be able to return to her police employeement. It does the heart some good to find something like that. Did you go out and have you a good time yet?
    I found a new neuro and all of the records are in place, so it looks like I'll have an appointment on monday or tuesday with him. He sees nothing but ms patience so maybe I'll get lucky. Guess what I have a date tonight!!!
    Just dancing and diet coke night, got to shoot myself tonight?
    I'm glad we are on this board maybe you'll get someone to reply. I should have come over with you sooner!!
    Thoughts and prayer, hugs and all!

    Last edited by anseay; 12-03-2004 at 08:25 AM.

     
    Old 12-04-2004, 08:05 PM   #5
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    Re: Chiari -ACM (anyone)

    HI. I am familar with this. My sister had all the symptoms and wasn't dianosed for a year. then her ENT looked at an x-ray that her GP doctor took and knew immediately what it was. (GP said it was a sinus infection!!) She had the surgery and is like a new person. Just talked with her tonight and it's been 9 months since surgery and she said she feels like a new person........surgery was tough...and quick a recovery time. But she did great and is so thankful there was a surgery they could do to put her out of her misery. She was absolutely miserable for so long!! She would cough and then almost faint.........this went on for a whole year......so the surgery was a life saver for her!!

     
    Old 12-05-2004, 03:35 AM   #6
    kirafaye
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    Re: Chiari -ACM (anyone)

    oh thank god! did she have an syrinxs? I'v been so sick for over 6yrs anything woudl be a blessing...............my case is quite sevre but if they coudl get rid of the pain and stabalise me man that woudl be liek a dream come true!

     
    Old 12-05-2004, 05:15 PM   #7
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    Re: Chiari -ACM (anyone)

    Her headaches were so bad she couldn't cough, sneeze, bend over without getting one. She would almost pass out. Her head hurt soooo bad. But now, she's back to normal and not one headache since surgery. She is so happy she finally is feeling like a normal person............go to your ENT and let him tell you what needs to be done...........they are more familiar with this than any doctor you could find......

     
    Old 12-07-2004, 10:09 AM   #8
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    Re: Chiari -ACM (anyone)

    Hello there, just a quick line to say I was thinking about you. How are you doing? find anymore good info, positive I hope. Take care! bevy

     
    Old 12-07-2004, 09:10 PM   #9
    kirafaye
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    Re: Chiari -ACM (anyone)

    I definatly want the surgery cause I can feel myself slipping abit and getting worse..........I'm rounding up people telling me they HAVE to come entertain me while I am out of it! and we are thinking of ways for when I move home (I live out of home) with my parents for a little while to entertain me and make things easy, my mum is even keeping the foxtel on yea!!!! I have my surgical consult on the 20th of this month so until then no real info and unfortunatly (fortunatly for them though) therre isn't many people on the net to talk to.

     
    Old 12-09-2004, 07:11 PM   #10
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    Re: Chiari -ACM (anyone)

    I'm glad your having the surguries, I'm more than sure than you'll do fine, just remember you'll have to have physical therapy also. After mine I was rather excited about the different weight systems out there. It's a battle, I know you can face, just make sure you post to me about how you are doing. But we are still in the posting you need to be in to get info. Just think when it's all over a new kira with the trimming of the mussels, I bet you'll be the talk of the town.The new buff. I enjoyed it. I've got to pick mine back up. Since I stop 47 years of gravity are coming back that I've got to stop. Who knows I bet your friends and mom might give it a go. It's not to hard starting out light with about 10 reps then working up for there. They'll train you how. I know that you'll have to be in alot less pain.

    Last edited by anseay; 12-09-2004 at 07:11 PM.

     
    Old 12-13-2004, 09:32 PM   #11
    kirafaye
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    Re: Chiari -ACM (anyone)

    Of course I'll keep you updated cause u'v been such a great friend! well the surgical consutl is in 6 days so its gettign really close!!!! eeek! I rang today to make sure everything has been sent and done and everythign is thank god. So until then I dont; have much of an update except that its so god damn hot here in QLD!!! and yeah I'm totally lookign forward to the lose of weight after surgery hehehe!

     
    Old 12-16-2004, 08:43 AM   #12
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    Re: Chiari -ACM (anyone)

    I didn't say anything about the lose of weight I was talking about tonning of the mussels and the more womenly shape you'll have. When I was in physical therapy to try and keep the strength up in my legs I could have swore that I riase my butt bottoms by 2 inches. HA HA I thought that you'd like that one. But I do miss the weights. I still use the ankle and wrist weights but they are not the same as a machine. Well here goes, MY liver functions are bad, real bad, I went to the doctor in October and they took blood and everything was fine and now Thursday Dec16 and I'm told to stop lipitor, niaspan, tylenol, and my once every two week beer. You notice I said beer instead of beers. I'm wondering if the rebif hasn't got something to do with it, I've got 5 doses left in the frige and after them I may suspend treatment depending on what the next blood work up says. I don't know right now. I'll keep you possted on everything, just like you let's wait and see. So summer has come to ausie. What's the temp? When I was on the truck going through Arizona, and eastern California on 10 and 40 the temp would get as high as 110 to 115. It was a dry heat no moisture to it so I rather enjoyed it. I've seeen everything and done everything I alwasys wanted to do but snokling at the southern Key's of Florida and Halabit fishing in Alaska. Talk about opisite ends of the usa.
    Well I"ll talk at ya later. Take care and I'm still right hear.

    Last edited by anseay; 12-16-2004 at 08:46 AM.

     
    Old 12-17-2004, 05:52 PM   #13
    anseay
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    Re: Chiari -ACM (anyone)

    hELLO kIRA FAYE....
    IT'S BEEN AWHILE AND I HOPE YOU ARE DOING FINE. YOUR SUPPOSE TO SEE THE SURGINE THIS WEEK RIGHT. WELL IT LOOKS LIKE WE MIGHT BE THERE TOGEATHER.
    I HOPE YOU SEE THIS BEFORE YOU GO OVER TO THE MS BOARD. I'VE RUN INTO A SLIGHT COMPLICATION. MY LIVER HAS HAD A APATHIC CYCST ON IT FOR ALMOST 2 YEARS AND THE LAST TIME I SAW THE DOCTOR SHE SAID IT SHOULD RUPTURE AND THE LIVER DISOLVE THE WASTE. WELL IT DIDN'T. EARLIER THE DOCTOR CALLED AND STOPPED ALL OF THE MEDS THAT HIT THE LIVER. WELL TODAY I STARTED TO HAVE PAIN CONSTANTLY FOR 30 MIN. I KNEW SOMETHING WAS WRONG AND DESCRIBED IT TO HIM. HE HAD HIS NURSE CALL AROUND TO FIND SOMONE TO DO AN ULTRASOUND ON IT TONIGHT. THE GP WAS HOPPING THE GALBLADDER WELL, IT'S THE LIVER. ON MONDAY THEY WILL HAVE ROUNDED UP ALL OF THE OTHER ULTRASOUND AND MESURE THE SIZE, I KNOW THAT THEY WILL ORDER A NEEDLE BIOPOSY. WE'LL GO FROM THERE. HOPE TO HERE FROM YOU SOON! MY THOUGHTS ARE WITH YOU

    Last edited by anseay; 12-17-2004 at 05:52 PM.

     
    Old 12-18-2004, 03:36 AM   #14
    kirafaye
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    Re: Chiari -ACM (anyone)

    My thoughts are with you too!!! u poor thing its just one thing after the other for people like us isn't.........wouldn't u like to get one break for once in ur life! yeah the appoitment is on monday comming so I'll know more then....hang in their friend!!! I'll be sending good vibes ur way!

     
    Old 12-18-2004, 09:42 AM   #15
    anseay
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    Re: Chiari -ACM (anyone)

    The vibes back atcha, I'm just sitting and waiting until Monday I'll be thinking of you at the same time. Best wishes and good luck. Yeah I'm waiting for the break, but I call that my saturday night dancing. It's fun and it's getting almost like i need a dance card now. It really does my heart good when I wallk in there and say "your one pretty lady" 48 with all these problems i feel like dirt but there is always someone to lift my spirits. back atcha later. probably on tuesday that way we well both have some news , crossing everything fingers, towes, legs for ya. til then hang in there kid!!!!!

    Last edited by anseay; 12-18-2004 at 09:43 AM.

     
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