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Chirai 1, Not living a normal childhood

Posted , 5 users are following.

OccultEnemy
OccultEnemy

Hi my name is Jake and I'm living with Borderline Chirai 1 malformation. I feel with this I can't live a normal childhood, I've always wanted to play football but my PCP and my mother are saying no. Keep in mind I'm only 15 and they let me play soccer. This honestly sucks ive had it for about 3 years and didn't put much thought into it. I've also had 3 concussions my latest one in September. Two were from me being stupid and the last one was in soccer. They have all been mild. Ive had headaches everyday for the past year but I think they've just been stress related and plus headaches run in the family but they only strike at a certain time of day. I've also been having upper neck pain, but I don't know if it's the Chirai or just me always looking down when I walk and always looking down at my phone. I don't know what to do I've feel my life has been rigged. Now trying to seek attention in any way but I'm scared I won't be able to have a normal childhood in playing football and a normal life in the future. The positions I've wanted to play in football was running back and safety. I just don't know want to do and I definitely do not want decompression surgery.

0 likes, 24 replies

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  • OccultEnemy
    OccultEnemy

    Posted

    Also I'm going to try to get my mom to clear me and try to go a neurosurgeon again to clear me. Besides the headache and upper neck pain I have no other symptoms. I don't know if there is a really great danger in me playing because it's borderline. If anyone knows what's the worse that can happen because I have no idea

    • helen11122
      helen11122 OccultEnemy

      Posted

      Hi, Apple is right you have to adapt your life and yes it really sucks having this! But you wake up every morning and know you can get out of bed and do other things, some are worse off and can't.. Don't let it beat you, yes it may get worse later on, or it may not... But whatever happens we are here to support you..x

  • Apple62
    Apple62 OccultEnemy

    Posted

    Hi Jake,

    I'm sorry to hear you are having problems.

    Have you had a recent MRI and visited your doctor? In regards to sports, I think you have to look at the bigger picture. Not everyone participates the same way. Just because you don't play doesn't mean you can't support others. You can find a different type of competition in which you can compete.

    It's rough when life goes a different way then you plan. Trust me I had planned to work in a job that I enjoyed and was up for a big raise and got sick. I had to leave my family and move to another state. They couldn't take care of me. I missed my Husband and my beloved dog 🐶 passed away. I've had to learn in whatever state to be happy.

    Finishing high school and planning for college or vocation is a lot to think about too. You have the most exciting years ahead of you.

    Until you get confirmation of your health status, try to think about things that make you happy.

    Enjoy each day of life. It is a gift. Don't worry about tomorrow until it comes. I'll be quiet now- but you get the idea. 🙋🏻

    • OccultEnemy
      OccultEnemy Apple62

      Posted

      Hi Apple,

      Here's the thing that I don't get. The doctors still don't want me playing when I have borderline to none chirai 1. I haven't been back to a neurosurgeon in about 3 years because my PCP would know, I think. The only other symptoms I've been experiencing besides the one's I said is intense anger which maybe just because of my adhd and anxiety, but when I'm on my meds I'm fine. The neck pain/back of head pain was really bad yesterday, not to bad today, as I said no matter what I'm not doing decompression surgery. I honestly thought chirai 1 was just the cerebellum was a little bit past the base of your school, nothing too it like it's just there no symptoms at all.

    • helen11122
      helen11122 OccultEnemy

      Posted

      Hope you don't mind me cutting in, I had no symptoms till I had car accident and they think the shunt progressed my chiari as head pressure was so bad, you can't push back up so i had to have surgery to release the pressure... Maybe they are being cautious so yours doesn't get worse and can live without surgery...

    • OccultEnemy
      OccultEnemy helen11122

      Posted

      Yeah maybe I should just stop thinking about mine and think about the people who have it a lot worse. I mean also during my MRI I was kind of shaky when they were doing my head and back because I just can't sit still I've always been like that. So maybe it was an error in the MRI I don't know, my mom is going to call a neurologist tomorrow.

  • OccultEnemy
    OccultEnemy

    Posted

    Ps to everyone I don't know if me not having really good motor skills has anything to do with it. I am extremely smart taking all honors and AP in everything else but like when we run a lab in Bio I have problems.

    • helen11122
      helen11122 OccultEnemy

      Posted

      You have to do the best you can, and by the sounds of it you are definitely doing that... I know it's frustrating, but accepting your conditions, and being happy is the main thing, positivity is good x

    • OccultEnemy
      OccultEnemy helen11122

      Posted

      Here's the thing though I'm not happy and I don't want to accept this condition hopefully that was just a false thing in my MRI and maybe I can redo it. Knowing my luck when I think it'll be better it'll be ten times worse.

    • helen11122
      helen11122 OccultEnemy

      Posted

      Ah I hope it is a mistake, and yes you won't be happy about it if it isn't.. But the the thing is if your condition is about to change, then yes you can wallow in self pity and feel sorry for yourself, which we all do to be honest, and say why me! Or you say this isn't going to beat me!.. Do see if they can redo scan, as you really have to stay still... Some have chiari and live with the it with no surgery... But my surgery was to stop it getting worse... Yes i would love a normal life, but it's not going to happen, I've got over the angry stage and I'm helping out doing housekeeping in a hospital with dementia and end of life patients.. Puts it in perspective a bit.. Keep us posted how you get on.. X

    • OccultEnemy
      OccultEnemy helen11122

      Posted

      See I've wanted to be an orthopedic spine surgeon my whole life or a neurosurgeon would this condition stop me from being it if the MRI is not a mistake.

    • helen11122
      helen11122 OccultEnemy

      Posted

      Could you not still do something in this field that the condition wouldn't effect you... I do hope so..

    • OccultEnemy
      OccultEnemy helen11122

      Posted

      I also think I should be allowed to play football because the size of my chirai or whatever is less than a pinhole.
    • helen11122
      helen11122 OccultEnemy

      Posted

      Yes but on the cautious side, a blow to the head could do a lot if damage, chance you take.
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