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  A Lady with Fight
Posts: 2701
  
Location: NC | Does anyone have any experience with this or know someone who does?
Thanks in advance.
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 My Heart Be Happy
Posts: 9159
 
Location: Arkansas | Bump |
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Go Get Em!
Posts: 13502
Location: OH. IO | I know my daughter has cerebellum tonsils that extend too far.she has 80 percent of the symptoms.we opted not to have surgery as it is a very dangerous brain surgery. What exactly are you looking for? |
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Veteran
Posts: 154
| I have Chiari Malformation I- I get some headaches and can't ride roller coasters. Rough horses are not an option either. I opted out doc the surgery |
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A Lady with Fight
Posts: 2701
Location: NC | Just looking for folks who have experience with it. What their docs have told them they could/couldn't do and such.
I have a friend who had the surgery. She swears it helped her 500% with her symptoms. Headaches, pain and such. She had a syrinx in her back that was causing her issues. She was even having seizures it was so bad.
Mine is acquired thanks to an arachnoid cyst in my posterior fossa. The VA doc didn't seem too concerned at all with it. He barely even mentioned it after an MRI for my cyst and a SECOND consult from my neurologist. But a specialist I contacted (at the advice of my sister) told me it wasn't exactly a great idea to continue to barrel race. He said he doesn't recommend it for someone with 'my anatomy'. So now I'm confused as to what to do. |
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Chi Chi Mama
Posts: 11211
Location: Spokompton, Wa | I graduated high school with a gal who is living with it. She had the surgery about a year ago. Here is her fb page if you want to check it out.
https://www.facebook.com/groups/772169372802255/ |
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Veteran
Posts: 154
| Mine is mild and I have no restriction. Was told to listen to my body
Love roller coasters, but they don't like me any more.
Can't tolerate a rough barrel horse
Other than that I am still good to go |
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 Expert
Posts: 1898
| I have it. I had my decompressive suboccipital craniectomy with dura plasty and cervical laminectomy in May of 2014. My tonsils were not that far descended but they had caused a syrnix from my C2 to my T6 almost T7 that was causing coordination issues, delayed reflexes and paralysis. I had sever headaches, lethargy, days of depression, days where it hurt so bad to get out of bed I just wanted to lay there and cry, days I was so nauseous I would have to call in sick, my neck and shoulders were always tense, burning and tight.
My surgeon does not think anyone, regardless of their physical status, should ride horses due to the risk of head and back trauma, but said when I was ready to start doing the things I did before, than I was ready. I competed in my first race that November. My husband made me a neck roll like bareback riders use, my horse is strong coming out of the barrels and it helped keep my head stable. I got a lot of laughs and stares but I pulled a 2D check that race. I have been running ever since.
I do stay off of broncy and goofy horses, and my confidence on new horses has dwindled some. I will deal with some tomfoolery but not a whole lot.
I don't let it get me down or alter my way life of life at all.
ETA: I still have mild headaches occasionally but not like before the surgery, the feeling in my right side has not come back but my coordination is better, the days of depression are almost none, nausea has left but neck and shoulders still have some pretty sever pain and burning. When I am really tired, physically and/or emotionally my balance is still pretty awful. I still lose my balance for no reason and almost fall over a lot but not as much as pre surgery. This especially if I am in a crowd of people or confined quarters.
Edited by cyount2009 2016-02-01 10:01 AM
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 I hate cooking and cleaning
Posts: 3310
Location: Jersey Girl | I am currently dealing with a CSF leak and have found that undiagonsed leaks can look like Chiara.
No other info to offer other then hope you find healing and answers.
I haven't been able to ride since before Thanksgiving and its really starting to tick me off that I still can't yet. I am losing patience for sure. |
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