My diagnosis

[CamiRein]

I'm 16 years old, and was diagnosed with Chiari in October of 2013. I get frequent headaches, but they aren't usually severe. Other than that, I don't have other symptoms like some do. Two months later in December, I traveled to Denver and spoke with Dr. Oro about my condition. He had told me that dying from this rare, and that I shouldn't worry, because I'm in great hands, and he's done the surgery over 700 times. He said that surgery is a possibility, but that it was my decision. I will probably go through with the surgery in the next couple years. Surgery scares me to death; I'm worried that I won't wake up from the anesthesia, or something will go wrong with the surgery. This diagnosis has completely consumed my life. Before my diagnosis, I used to be so happy, full of life, and outgoing. Now, I don't do anything. I used to be in every sport; you name it, I was in it. I was such an athletic person, but now that I have this, I won't even go for a run. I was starting spiker on my volleyball team, but I'm not even in the sport anymore. I can't do the things I love. I don't go hang out with my friends. I sit at home and cry myself to sleep every night. I'm severely depressed because of this, and haven't been able to eat much. I've lost 25 pounds since November, because I hardly eat. I used to have a 4.0 GPA, and now I'm on the verge of failing my junior year. Every day, I have panic attacks because I fear that I'm going to go to sleep, and never wake up, or one day, I'm just going to die. I won't even plan 3 days ahead, because I worry I won't make it that long. My parents try their best to console me and tell me that I'm going to be fine, but it just isn't helping at all. They've tried to put me in therapy, and it isn't doing any good. Chiari has completely RUINED my life. I don't think of getting married someday and having children, simply because I worry that I'm going to die before then. I don't mean to sound like a pity party, but no one should ever have to go through what I'm going through. No one should ever have to think of dying when they are only 16. They should be out and having fun before they grow old. I don't know what to do anymore... My panic attacks are so bad, and they aren't getting any better. I just wish chiari never existed...

[Jm_smalformedbrain]

Hi Cami! I totally understand and have suffered since birth with this as well. I just wasn't diagnosed until December. I remember having headaches so bad in highschool that on band trips my friends would be completely quiet , massage my head, and constantly check on me all the way home from a game. That's a feat for a bus full of teens! They would also modify cheerleading for me and knew when I got a headache I couldn't do certain things. And, I survived until now, 31! You are going to do just fine hun!!! We are all here for you and your family is too. It's a life altering diagnosis and we have to make sure we get the research done, awareness out, and knowledge where it needs to go so life may be better for people like us in 10, 20, 30 yrs from now. Some days will be worse than others and some days you won't even know it's there. Keep that head up girlie. (I'm a Therapist so if you do have major depression, please talk to someone and find someone that you can talk to so you feel like it's "helping" you). All of us don't practice the same therapy and even if you don't think it's helping, it is. We are praying for you!!!

[kwalker0004]

Hi and welcome. Don't let the diagnosis consume your life. I was born with this condition as well. I have had headaches since I was 15. I would go to my mom about it. The only thing that was told to me was every female from my great grand mother to my younger sister all has mind splitting head aches. So I thought it was genetics. I have always suffered from depression for as long as I could remember but quit taking medication before i turned into a zombie like my brothers. Many people go undiagnosed for many years and live through the pain. So live life and as selmaS has said know your limit and plan to need lots of rest if you do activities.

Please don't let the diagnosis control your life. Surround yourself with positives. Surround yourself with positive people don't push your friends away, you will need them in the future. You may never know one of your female friends might be diagnosed with this and you will be able to help her through this. Since its more common in females. I urged my sisters to get tested since they have headaches as well. They haven't yet but I won't stop until they do.

Keep ur  head up!!

[hevnw8s]

Hi...and welcome. First of all...take a deep breath and breathe. As selmsS said, don't focus on the negative. You are young and have a long life ahead of you. If you spend your time sitting alone worrying about things that may not happen, then you are only sabotaging your own future.

Chiari does alter your life....but you adjust...you DON"T give up. All of us here are fighters. We find the humor in what we have, we talk about the hard times when we have them and we build strong support from each other.

Pick yourself up and get on with your life. We are here to give support when you need it. Just be kind to your body and listen to it when it tells you to relax.

Kim

[selmaS]

Hi and welcome to the Chiari forum.

The only difference btwn me and u is the MRI was available for u at a young age to get a DX, but I too had it since birth and I am living a full life, I have a family and am looking forward to grand kids soon too I hope....it does not have to consume ur life, and there is life after surgery albeit a little different from b4 as Chiari is life altering....but there is life...so live it !!!

Just make sure u know ALL the related conditions u may have b4 u decide to have surgery....know if u have a CSF obstruction, a syrinx, sleep apnea, tethered cord, or ehlers-danlos, ICP and POTS....u have time if ur symptoms are not affecting u....and I had headaches in high school and did not have surgery until I was 49....as I was not DX'd until I was 48....as I said u have an advantage of the MRI being available for a faster DX....I did not.

Educate urself, but do not focus ur life on what u can not do, focus on what u can do !

The panic and or anxiety can be Chiari related....

BTW- ALL Chiari specialists will leave having surgery up to the patient unless u were in a life threatening situation...which is rare.

Go have fun, but listen to ur body and if u feel worse after an activity don't do it.