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  • Chiari -ACM (anyone)

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    Old 01-22-2005, 08:53 PM   #31
    JenEbean
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    Re: Chiari -ACM (anyone)

    I had the decompression in 1998 for ACM I. The surgery was not as bad as I expected. Not nearly the pain that I was excpecting. The worst part was the ride home from the hospital. I lived a 1 & 1/2 hour ride from where the surgery was done. Take lots of pillows to take to pack yourself comfortably into the car for the trip home. You will feel every little bump. Of course I was sore from the surgery but no major pain, I didn't take anything stronger than Darvocet or Tylenol. Still symptom free to this day. It is so wonderful to wake up in the mornings without a headache. Good luck to you. You will feel so much better when all this is over.

     
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    Old 01-23-2005, 03:25 AM   #32
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    Re: Chiari -ACM (anyone)

    How much was everyone's chiari extended? Mine is 8mm - will that require surgery?

     
    Old 01-23-2005, 04:24 AM   #33
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    Re: Chiari -ACM (anyone)

    Quote:
    Originally Posted by FUNKYHEADGIRL
    How much was everyone's chiari extended? Mine is 8mm - will that require surgery?
    they never did tell me how far mine was, all I do know is it was affecting my brain stem, cause\ing heart irregularities and stroke like symptoms, resp trouble, swallowing difficulties, severe headaches, trouble walking, right arm numb and heavy like feeling in it, pins and needles in right hand oh the list goes on and on hahah As I said they thought I had MS. I know they had to take bones out of my neck and a piece of bone out of my head and then do a graft to make a pouch for the brain that was were it shouldn't have been. As the doctor described it they had to make more room for the brain, as it wasn't suppose to be there and was being squished, so to speak. I didn't have a lot of pain after the surgery, more of a tight feeling, I was sick for a few days after surgery until the ventricular pressures settled,as the fluid had been blocked prior to the surgery and then about 3 weeks after the surgery which i'm told is pretty normal too, blood dissolving or something. I'm glad I had the surgery, I do have other health problems but having this one lessened so much has made a great difference in my life. I do still get headaches and I do still feel that there is something where it shouldn't be if I turn my head too quick or put too much strain on my neck but otherwise no more stroke like symptoms.

     
    Old 01-25-2005, 01:55 AM   #34
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    Re: Chiari -ACM (anyone)

    and don't fall down stairs! I hit my head doing that recently and I have yet to really recover! well mines about 20mm from what I can gather cause I know it distends to C2 and someone else who had that level said theirs was about that long. I think its not really the length but the affect it has on ur body, some people with ACM are asymptomatic and generally don't bother with the surgery so its up to you and ur neuro to decide.

     
    Old 01-27-2005, 08:54 AM   #35
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    Re: Chiari -ACM (anyone)

    geez kira, I can only imagine how a fall down the stairs would affect it I hope our doing better.......I also refrain from bungy jumping and contact football. hahahahahah.

     
    Old 01-29-2005, 01:41 PM   #36
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    Re: Chiari -ACM (anyone)

    Hi Kira:

    I know that I haven't been on the computer lately. I've just come on to see how your doing. It's the 30th now so you will have had your surgury. I really hope that everything is going well for you. Yes we both new that the surgury that you had to face was no picnic, but in the end you'll still have to do some physical therapy of some sort I imagine. Time will tell you what damage they were able to reverse. I have both fingers and toes crossed for a really great out come.

    Since I talk to you last all of the ms symptoms are back. The eyes are worst now, then before the rebif. The last evoke potential last week they couldn't get a reading unless if I had my glasses on. I see the new neuro. on the 3rd. He mentioned copaxone to me. I don't know what to think anymore. I'm working through vocational rehabilitation. Even now they are having to split the work week. 2 days on 1 off 2 days on and then the 2 day weekend. Before trying this I tried to work 4 days straight and spent 3 days in bed. The dizzies are fun now though. Time will see.

    Just a quick line to you and I can't wait to hear your news.

    Last edited by anseay; 01-29-2005 at 01:42 PM.

     
    Old 02-04-2005, 09:28 PM   #37
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    Re: Chiari -ACM (anyone)

    I'm back from surgery!!!! Like I have only been home half an hour or so. I feel ok basically the same as when I went to go in, but we knew it was only stabalise and its still early days. When I'm a bit better I 'll write a full account oh the surgery, but it really wasn't too bad and I had a great neuro and nursing staff so at least I feel safe

     
    Old 02-05-2005, 10:10 PM   #38
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    Re: Chiari -ACM (anyone)

    Congratulations and welcome back, Kira! Hopefully, your new life has only just begun!

    I had my decompression about 5 years ago, and I wanted to tell you that even though I still have some Chiari symptoms (and also have MS), I live life to it's fullest, and don't let these annoying diseases slow me down (too much). Everybody has to make their own decisions regarding the risks they are willing to take (ie, bungie jumping and contact football - haha!), but the way I look at it, life is short, there are no guarantees, and I could get hit by a car tomorrow, so I'm not gonna skip something I enjoy because it MAY be dangerous.

    So, for me, that's horseback riding. I compete in rodeo events, train horses, show... and have a lot of fun doing it! After my surgery, I went back to my neuro for my 6 week checkup, knowing he would give me he11 for having done lots of stuff he said I shouldn't (like farm chores and taking care of my horses), and wondering what my "rehab therapy" would be. When I asked about it, he said "I don't want to know what you've been doing, but forget about rehab and go home and keep on doing it, because I've never seen another patient recover from this surgery as well as you have!"

    Like I said, you have to make your own choices, based on what you feel comfortable and safe with... but I was NOT comfortable without my horses, and I really think they have kept me going through both diseases, so I'm willing to take the risks that come with them. Just don't think your life is over because you have these problems - it's only over if you think it is.

    MustangFilly

     
    Old 02-06-2005, 12:46 PM   #39
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    Re: Chiari -ACM (anyone)

    mustang that is awesome your a role model for many i'm sure. Its great that you can put your illness in its place and not let it take away from the things you love..........
    Kira I hope you just get better and better and can't wait to read your story of surgery.
    cleo

     
    Old 02-08-2005, 08:29 PM   #40
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    Re: Chiari -ACM (anyone)

    Glad to here it. I wish I had better news here. It look's like my right kidney is sutting down, there's no pain just a not on the kidney. I go to the doctor tomarrow, just relized that I've grin 20 lbs. and int's in fluid. Duke medical center is in my future. Beleive it or not this new nuuro is senting me up there for a ceconened opinion before starting me on the copaxan. Sure is better then the second neoro, the one the that started me on rebif. I know what it did to the liver I'm left wondering if rebif had anything to do with the kidneys.

    Glad your home and now the mending begins, a brighter future, my thoughts and prayers are with you.
    Take care! I'll get back soon. Like before I'm hear!!!!!!!!

    Last edited by anseay; 02-08-2005 at 08:30 PM.

     
    Old 02-12-2005, 09:57 PM   #41
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    Re: Chiari -ACM (anyone)

    Thats sad to hear that things aren't going the best for you I'm having a bad day at the moment, sharp pains shootign thru my head to my eyeballs and right side is pretty bad and painful......cross fingers we both ge a break soon!

     
    Old 03-04-2005, 12:31 PM   #42
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    Re: Chiari -ACM (anyone)

    I have had one MRI that was ruled "perfectly normal" and one of the men who looked at the MRI would indeed be very familiar with ACM even though this condition was not suspected at the time.
    It would seem highly unlikely for my MRI to reveal ACM and it still having been described as 'normal', however I've taken a quick look at some MRIs on the web and although I have difficulty reading them, I am not too sure that ACM should be ruled out.

    Last edited by moderator2; 03-05-2005 at 05:45 AM.

     
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