I just need someone who understands me!

Posted , 8 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

I'm 13 years old and was recently diagnosed with Chiari Malformation. I have about every symptom and they are very bad. Along with Chiari Malformation I suffer from Complex Migraines. Due to all off that I was recently put in the hospital. It was very scary. It looked like I was having a stroke. Nobody knoes what I am going through. I haven't really told a lot of my friends. The ones I have just crack jokes and I just laugh through it. Then you have others who say are you sure you was sick. My family just feel bad for me. I need to talk to someone that can relate to me. 

1 like, 18 replies

Report

18 Replies

Next
  • Posted

    Hi Madalyn,

    What did the doctors tell u in the hospital?

    What symptoms are you having? Did you see a neurosurgeon? Are there any questions we can try to answer for you?

    Please let us know how we can help you.

    I know this is scary but there are people that live with Chiari daily. Try to relax if you can. Hope to hear from u soon. 🍎

    Report
    • Posted

      I have seen a neurosurgeon and will be going got my 2nd MRI the 11th of this month. I go tomorrow to see a neurologist. The doctors actually contacted my nuerosurgeon and he believes that this most likely is not related to the Chairi Malformation. So, they diagnosed me with complex migraines. My symptoms for Chiari include back ache, neck ache, pressure in the head, ringing of the ears, headaches and these come everyday, tingling of the hands and feet. At the moment I do not have any questions but if I do in the future I will definitely let you all know. It definitely is scary.
      Report
  • Posted

    Aw honey I'm so so sorry you are going through this. I too have chiari malformation which I have had decompression surgery for last November. I'm 41 and it's hard enough for you so young. You sound very brave and strong! It's hard when people don't understand how we are feeling. We look 'normal' bit inside we feel such pain.

    It's hard but children can be cruel sweetie they don't understand the impact this has on you.

    A couple of things you could do. You could ask your school if you could do a talk on chiari malformation perhaps get one of the teachers to help you get information together to share with your class, year, or even school. Stand up tall and educate these people. You know in a big high school the likelihood is your not going to be the only person in the school with chiari you might find somebody else in the school with this. You can request counselling via your gp. School will have this facility too. It may help you to talk out how your feeling. I guess the only other thing is what is being done about your symptoms? You need to be seen by a Neuro surgeon or at least be under the care of neurology. If you are great if not you need to be referred via your gp. Not sure if your inside or outside the UK? It may be worth looking in line for support groups not sure if you have Facebook but there are a few on there just be careful as many of them gave adults on them and their language can be a little blue!! If there isn't a group suitable for your age set one up get the word out there you could advertise it on here there has been other children asking questions so there is definantly a need!! Don't lose hope honey kick chiari in the butt!! Take control of chiari font let chiari take control of you xx

    Report
    • Posted

      Thank you! I have already seen a neurosurgeon and go tomorrow to see a new neurologist.

      Did the decompression surgery help you?

      Report
    • Posted

      Hi Madelyn

      The decompression surgery has stopped my symptoms getting any worse. After decompression surgery I won't lie it has been hard. Everyone's chiari and recovery is very individual but most people suffer low pressure headaches in the frontal lobe till our brains get use to having the csf flowing. Caffeine helps it opens up the valves in your brain. My ns advised headaches normally last around a year to 18 months but again we 're all different. I have been left with the numbness in my hands and feet but I'm more or less back to my new normal and due to go back to work in 4 weeks. I'm back driving and mountain biking so there is no reason to think you can get back to normal life after the surgery just with some baggage!! If my ns felt it was necessary to do this invasive surgery then I new it was needed.

      I hope your ns listens to you and gives you your options and helps you decide with your family which direction you should go in.

      Jaquie xx

      Report
    • Posted

      Thank you ! You don't do so bad yourself 😉

      It's a lonely place dont you think? This time last year I was completely unaware of chiari now I know more than my own gp lol! If we can help just one person fight chiari it makes a difference. Iv learnt to kick it's arse after my surgery! We can all kick chiaris arse with the right support xx

      Report
    • Posted

      Yes, you can tell people how you feel but it flys right over their heads. Hope today is great for you.
      Report
  • Posted

    You have some good advice here, adults too think because you look OK on the outside there's not much wrong with you... It's even worse for children as they don't understand and can be cruel.. Yes I would definitely try and educate your school.. Your teacher could start by introducing that you have a rare condition, your doing the best thing by brushing comments off rather than retaliate and get upset in front of them.. As a parent you want to protect your children, must be very worrying for your parents.. We are here to answer any questions to you or your parents hun x

    Report
    • Posted

      People definitely need to get educated on Chiari Malformation instead of judging. Many people don't believe me that I suffer from anything like this. It definitely has been hard on my parents. It's kinda brought my family closer.

      Report
  • Posted

    Hi Madalyn,

    Sounds like you're going through a rough time. I completely understand how it feels, Chiari can be isolating! Even the most understanding person can't really know what it's like to have this condition, and even a lot of Doctors don't truly understand it!

    Have you tried joining a few Facebook support groups? You'll find lots of us to talk to, and may even be able to connect with someone in your area. If you search "Chiari Support" you will find a good group, or "Chiari and Syringomyelia: UK Support Group" which again, is a good group. Both groups are full of very friendly and helpful people who you can reach out to day or night... There is always someone online to chat to.

    Stay positive, it's possible to still have a great life even with this condition, even if it doesn't feel like it right now. Diagnosis can be scary and overwhelming, but you'll get used to it and come out the other side, I promise. Don't forget there are surgical options too which may help you.

    Keep smiling and keep reaching out. We're all here for you xx

    Report
    • Posted

      Last night I just got so down and was determined to find a support group to find people who understand me. I didn't even think about looking on Facebook.

      We are looking at surgical options and that will be discussed more my next neurosurgeon appointment which is April 11. On that appointment I will get another MRI which will also be on my spine. Unless something shows up on this MRI the nureosurgeon most likely will disagree on surgery.

      Report
    • Posted

      Hi Madalyn,

      As you can see by the responses of everyone, there are alot of people with the same thing. Chiari and a whole list of symptoms. I was diagnosed in Feb. of 2016. I finally was diagnosed after a year of them telling me its just a migraine. I had my surgery in May 9, 20116. I still have mild headaches. At times I still have what the doctor calls complex migraines that cause stroke like symtoms.  Iknow you are young,and you have been threw alot, but we are a kinda of support group. the people on this site are wonderful. We all wish you the best. We are here for you. You will have good days and bad days, Just reach out if you need us.

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up