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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

24 Replies

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  • jaquie197513
    jaquie197513 OccultEnemy

    Posted

    Hi occultEnemy

    I'm jaquie and I too have chiari however I'm nearly 42! That doesn't mean yo say I don't know how your feeling cos I do! I can see 2 sides to your situation I can see from a sufferer if chiari that you want a normal life as a child but I can also see it from a patents perspective having a 14 and 11 year old children.

    Chiari is something you learn to live with surgery is one option iv had surgery but that was to stop me getting worse. I would advice that if you have been diagnosed you will be referred to a Neuro surgeon to discuss your options. Maybe pain clinic is a way forward. You will find that a Neuro surgeon won't want to do decompression surgery on a minor cos you have growing to do. Again you need to see a professional about your chiari this will not only be of benefit to you but also your parents. Being a mum of a child that is given a diagnosis like this is going to be scary for them. They will do anything to protect you. You all need to understand what chiari is and how you can live with it. I wish you good luck seek professional help and you will then be able find a way to continue with your childhood with the support from your family x

    • OccultEnemy
      OccultEnemy jaquie197513

      Posted

      Hi,

      I went to a Neurosurgeon three years ago and he said we really shouldn't worry about it. The headaches have gotten worse though so I'm gonna go back

    • jaquie197513
      jaquie197513 OccultEnemy

      Posted

      I think that's a really good way forward. You need to fully understand your options as does your mom. Don't let chiari rule you kick it's arse control it don't let it control you

    • helen11122
      helen11122 OccultEnemy

      Posted

      I think you have had really good advice on here, and as a parent myself, you hate to see your child unhappy, especially when you can't do anything to help, your parents are only trying to protect you hun..

    • shadow123
      shadow123 OccultEnemy

      Posted

      Hi I have been reading what your saying, You maybe answering your own questions. You said your worried, your headaches are getting worse, you want to see a Neurosurgeon. You said you have motor skills difficulties. All are symptoms, and there are a whole other list that Chiari can have.  Each person is different to how severe it can become. You already said the pain is increasing, why take a chance. There are so many other way to get involved in school activities. My advise, is to be honest with yourself, make a list of your symtoms, How you feel day to day, when is it happening etc. How you are feeling when you get the head pain and take it with you to the doctors. Let them determine what choices you can make.  Lastly Iet your family be there for you, you want them to be by your side threw this, so lean on them. Let them help support you about your decisions you make, Best Wishes to you from someone who has been threw the headaches, the surgery and is still recovering 
    • OccultEnemy
      OccultEnemy shadow123

      Posted

      I've had problems not with my motor skills but with my fine motor skills since I was a little kid. I had an IEP then so that might have something to do with it. This was back in the 1st grade

    • OccultEnemy
      OccultEnemy shadow123

      Posted

      I also notice the time I mostly get my headaches is history class and they last the rest of that day because the heat is always cranking in there and the Windows are open.
    • shadow123
      shadow123 OccultEnemy

      Posted

      Hi, I had my chiari surgery may 9,2016, I still have symptoms, I still have a mild headache everyday. Then there are bad days when i have complex migraine which causes stroke like symtoms and I get a tingling left arm and leg. The symptoms can last 2hours to 4 days before they go away. It difficult to deal with. Im so sorry you are dealing with this at a young age. I know its hard to make people understand what you are going through, but keep trying. It took the doctors 13 months for the diagnosis and another 5 months before the surgery. I get botox shots in my head every 3 months that seem to help with the migraines. Maybe its an option for you. I wish you the best of luck. 
  • Apple62
    Apple62 OccultEnemy

    Posted

    If you are having additional symptoms, you need to be checked. Go from there and know you have people supporting you. If you play contact sports, you could injure yourself and make things worse. Personally, I just wouldn't take the chance. You sound like a smart young man. I hope you take the advice everyone has given you! Cheers!🍎

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