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Thread: chances of a chiari?

  1. #1
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    chances of a chiari?

    i am 19 and i have moderated scoliosis and for the last two years or so i have been having headaches almost constantly. They reside in my forehead and my eyes and i get tingly fingers and i get dizzy when i stand up all the time. My ears also always feel plugged up but they really aren't. I was wondering what the chances of having a chiari are. I have had an MRI of my entire spine but never one of my brain. I have not asked my dr. about the possibility of a chiari but my family practice dr. says it's sinuses and allergies. I don't have any symptoms of allergies thought except for these headaches so it makes me wonder because i am on allergy meds but am still getting headaches. I have a little brother who had spina bifida.... does anyone think it would be worth it to ask my family practice dr. about a chiari since i have scoliosis? I have my cervical mri on a cd and i tried to see if i could see anything on there but it doesn't go up high enough to really tell. Input??? Thanks!
    aBbiE
    22 yr old F,KU college student
    Kyphoscoliosis...
    Scoliosis (25T, 23L) diagnosed @ 14 yrs old; curves June 08 were 45T, 32L with 18 degree rotation
    Kyphosis of 65 degrees...
    I am missing a lumbar vertebrae

    Surgery 6/30/2008 with Dr. Lawrence Lenke
    Fused T2-L2


    before/after pics
    all smiles!

  2. #2
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    Sep 2003
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    NJ
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    Unhappy Headaches

    I certainly would visit a neurologist to search out the reason for headaches -especially if you have the other symptoms. The best way to solve the problem is to find and remove the cause if possible.

    Even though I have a great family practice doc I went on my own to search out my answer regarding scoliosis and anything else that comes up.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  3. #3
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    Jun 2005
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    Ohio
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    Hey, I'm no expert, but I do have Chiari. There are SO MANY different symptoms to Chiari. I for one only have rare headaches, but when I do get them, they're awful. Some get them everyday, or some get them never. What I'm trying to get at is that just because you get those headaches doesn't mean Chiari. You should definitely get them checked out, but hopefully it will be something smaller. Chiari is such a frustrating condition because every patient has a different variation!!! Good luck!
    Scoliosis for 8 years, Milwaukee, Providence & Boston braces. 35T 42L Dx'd with Chiari Malformation 8/06, decompression surgery + duraplasty 11/24/06.

  4. #4
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    Aug 2006
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    Lawrence, Kansas/ Overland Park, KS
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    i realize that just because i get headaches it doesn't mean i have a chiari but considering with other symptoms and having a brother with a very related condition that's why i wanted to see if it's worth asking my dr.

    you seem offended that i asked... keep in mind we are all in the same boat here
    aBbiE
    22 yr old F,KU college student
    Kyphoscoliosis...
    Scoliosis (25T, 23L) diagnosed @ 14 yrs old; curves June 08 were 45T, 32L with 18 degree rotation
    Kyphosis of 65 degrees...
    I am missing a lumbar vertebrae

    Surgery 6/30/2008 with Dr. Lawrence Lenke
    Fused T2-L2


    before/after pics
    all smiles!

  5. #5
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    Jun 2005
    Location
    Ohio
    Posts
    41
    No no no no, not at all!!!!! That sounds a lot different when you read it than how I mean, I swear!!! What I'm trying to say is that I hope you don't have it, just because it's so frustrating. I'm not doubting you at all!!!!!! Please believe me... I understand what that's like, because tons of people doubt me every day, so I would never do that. I was just saying that I know firsthand about how hard and scary getting Chiari is, so I was just saying that for your sake, I hope it's not. I'm not belittling you, because I don't even know you! That's what's so frustrating about internet forums like this... you can never hear how the person meant it. I'm sorry that I upset you.... I honestly didn't mean to. I hope this won't ruin anything, because we're fairly close in age and we might be going through the same thing. It'd be nice to have another Chiari teenager around here! (But that's not saying that I hope you have chiari, obviously lol) This is tough to do over the internet!!!
    Scoliosis for 8 years, Milwaukee, Providence & Boston braces. 35T 42L Dx'd with Chiari Malformation 8/06, decompression surgery + duraplasty 11/24/06.

  6. #6
    Join Date
    Dec 2006
    Location
    London, Ontario, CANADA
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    36

    yes

    Talk to your doctor. Don't be afraid to tell him what you think <---that's important.
    I'm a 20 year old girl n Ontario Canada...I had the spinal fusion for my scoliosis 3 years ago...after watching and watching and watching it get worse and worse and worse....
    Now I know I have syringomyelia...a syrinx...look it up.
    I have headaches that make me feel like my head is going to pop. And I get dizzy when I stand up and my doctor doesn't think anthng of it. He's just like "oh...i see"
    So I think the both of us need to tel out doctors exactly what we think...and why.

  7. #7
    Join Date
    Mar 2007
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    105
    What exactly is Chiari?

    I myself have had more neck pain that leads to headaches- once I relieve the neck pain (massage usually works) the headaches go away.

    I also have the clogged ear feeling- even when I lean a certain way to stretch I hear a faint sound (kinda like when they tell you your ear is buzzing someone's thinking of you) except it always happens when I arch my back to stretch...

    Also I have those dizzy spells if I have been laying down or sitting and get up too fast- I just always figured it was because I didn't get enough fruits and veggies or something that day.

    Anyways, I figured maybe some of you could relate or let me know if this is anything I should be concerned about as well... it sounds like Chiari is rare but maybe there is something else spine related or something I should get checked out.

    Thanks,
    Tracy

  8. #8
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    May 2005
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    Abbie,

    Have you ever been tested for allergies? I am only asking because just a while ago I was talking to a friend of mine who is a nurse and some how we started talking about allergies. She was telling me about a neighbors daughter who was complaining about plugged ears & not being able to hear and some how they found out that it was caused by an allergic reaction to wheat. She has restricted wheat from her diet and her hearing did return to normal. After a year she is slowly trying to reintroduce it into her diet. Just a thought -

    Renee

  9. #9
    Join Date
    May 2005
    Location
    Perth, Australia
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    I agree with Karen (as usual!)... see a neurologist.
    Having tingling in your fingers can be a sign of a slipped cervical disc, or of Thoracic Outlet Syndrome. Neither of which are fun, and both of which can be detected by a half-decent neuro.
    I don't have either of the above, but I've been checked for them... I have the forehead-based headaches with shooting pain behind the eyes, and the dizziness too. After many different tests, it proved to be my shoulder and neck muscles, which were overly weak, thanks to me giving into my curve too much as a younger lad. Physical therapy on my neck and shoulders has been gradually reducing the frequency and intensity of the headaches and dizziness over time.
    So there's a few things that it could be. A neuro should be able to check all of these things out for you.

    EDIT: Whoops, I forgot to add... the first thing the family doctor checked me out for when I first presented with my headaches was... you guessed it, sinuses and allergies!

  10. #10
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    Aug 2006
    Location
    Lawrence, Kansas/ Overland Park, KS
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    thank you all for your replies... I went and saw an allergist today and turns out i'm not allergic to anything! kinda what i thought but good to know for sure anyways. The dr. is having me try one more type of nasal antihistamine to make sure the headaches don't have anything to do with my sinuses but he told me that if that doesn't work that i should go see a neurologist.
    aBbiE
    22 yr old F,KU college student
    Kyphoscoliosis...
    Scoliosis (25T, 23L) diagnosed @ 14 yrs old; curves June 08 were 45T, 32L with 18 degree rotation
    Kyphosis of 65 degrees...
    I am missing a lumbar vertebrae

    Surgery 6/30/2008 with Dr. Lawrence Lenke
    Fused T2-L2


    before/after pics
    all smiles!

  11. #11
    Join Date
    Aug 2006
    Location
    Lawrence, Kansas/ Overland Park, KS
    Posts
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    OK, so you all may think i'm crazy, but here's a shot of my cervical mri. I know that for a chiari you need a brain mri, but i haven't had one of those yet. I am going to go see a neurologist in two weeks. Does this look like a smallish chiari or am i just imagining things? Someone who knows what to look for, will you look at this? I know that your cerebral tonsils have to be extending through the foramen magnum but i can't figure out where abouts that is... anyways, comments would be great.

    cervical mri

    If you read my previous posts, it tells about my headaches, etc. that i've been having constantly for the past like 2 years.
    Last edited by amae28; 07-26-2007 at 03:44 PM.
    aBbiE
    22 yr old F,KU college student
    Kyphoscoliosis...
    Scoliosis (25T, 23L) diagnosed @ 14 yrs old; curves June 08 were 45T, 32L with 18 degree rotation
    Kyphosis of 65 degrees...
    I am missing a lumbar vertebrae

    Surgery 6/30/2008 with Dr. Lawrence Lenke
    Fused T2-L2


    before/after pics
    all smiles!

  12. #12
    Join Date
    Mar 2006
    Location
    DFW, TX
    Posts
    159

    Chiari website

    To find out more about Chiari go to www.asap.org . My daughter had it and we had no idea until a 3rd doctor had an MRI done. She did not have headaches, but this is a symptym some get. You want to rule it out, or find out what you need to do if you have it. Not all require surgery, but my daughter's did since she had large syring. That is also on the site. Large pocket of fluid in her spinal cord. I wish you the best but certainly rule it out!
    Shirley
    Mom to Amanda, 18, Scoliosis T58, previous Spinecor bracing for 9 months before diagnosed with Chiari I CM, and Syringomyelia (Syrinx) SM. CM/SM decompression surgery 12/4/06, Spinal fusion surgery with titanium rods and hardware and full correction 8/1/07 at Texas Scottish Rite Hospital for Children.

    Also mom to Megan, 14, with diagnosis PDD-NOS on the autism spectrum

  13. #13
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    An odd topic for me to see, Abbie: I have unexplained communicating hydrocephalus (non-ACM) and an almost 19 year old (never revised) VP shunt.

    Yes, hon ... see a neurologist if you suspect Chiari Malformation/an involved syrinx, and Google HYCEPH-L for a *really* good Chiari/Hydrocephalus listserve.

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

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