20 Things about my Chiari

Chiari Carnival

For Chiari Awareness Month in September

 

20 Things about my Chiari

1. Diagnosed when? September 2011

2. Decompressed, if so when? November 2011

3. Other additional conditions, if so which ones? Klippel Feil

4. Have you personally met someone else with Chiari? Yes. I went to a Chiari Awareness Event in Santa Barbara by the International Chiari Association.

5. Most challenging symptom(s)? Sleeping and eating

6. Most embarrassing Chiari moment? Being called a girl. I think because my hair is long since I can't cut it being stuck in the halo.

7. Biggest Chiari frustrations(s)? Chiari is an invisible illness. Most people do not understand how I feel.

8. Number of medications in your personal medicine cabinet? 9

9. Number of Doctors/Therapists stored in your phone? None. I leave that up to my mom.

10. Do you attend Dr appointments solo or with support? Always with my mom.

11. Biggest regret that Chiari has created? Took away some of my favorite things to do such as roller coasters and Karate.

12. Biggest lesson that Chiari has taught? Try to enjoy what I can do.

13. Favorite non-medicinal therapy? X-box

14. Worst medicinal side effect? Choking on pills; stomach aches.

15. Biggest change in your life since diagnosis? Not going to school and dropping out of Karate.

16. Worst medical test? MRI - it takes sooooo long.

17. Hardest thing to give up because of Chiari? Roller coasters.

18. Have you become more or less religious since diagnosis? No change.

19. Where do you find enjoyment now, that you didn't before? I haven't yet.

20. Favorite Chiari websites? Lots.

Going to England...well, my images are

I saw my doctor on Friday. He told me that he is going to England in a week to do a talk about Chiari and my images are going with him. He said my condition is so rare and severe because I have Klippel-Feil and Chiari that my surgery was complicated and I'm a good study for his talk. He said he wish I could fully understand the complexity and severity of my condition. Dr. Pang looked excited about his presentation and he offered to show it to my parents and me. After my exam and after Dr. Pang told me I have to have my pin sites moved, he took us into a conference room and showed us his PowerPoint presentation. He said the presentation is very long but he went over the highlights with us and when he got to my images he showed us everything and explained what he will be talking about in England.  My images are going to England. :)

The Ides of Madness

Blog Carnival 2
The Ides of Madness
Alternatives to Breaking Down, Falling Apart or Cracking Up

Shalunya chose an appropriate topic, The Ides of Madness, for this month's blog carnival because March is widely known to be linked with 'madness'; linked in ways we may or may not be aware of. And by-the-way, March madness is not only about basketball. I believe the changing of the seasons and March equinox contribute to March madness. But this post is about Kyle's Ides of Madness with Chiari Malformation, the alternatives to breaking down, falling apart or cracking up.

Kyle is the one living with Chiari and I am the one supporting him. Sometimes, I can feel his madness, or maybe it's my madness. One of the most frustrating madness is when people look at him and are not aware of his pain. They are not aware of what he has gone through, what he will go through. They don't know he is trying his hardest to live with his discomfort. They don't know that he is heartbroken to never again be able to do things he use to such as ride roller coasters or continue with his Karate studies. But Kyle doesn't want people to pity him. He just wants people to understand him.

Kyle is strong mentally. He is not shy or afraid to speak his mind. He is not embarrassed of his scar or his halo. He doesn't care that people stop us in public and comment about his halo. But people feel like they have to say something that makes everyone laugh. Most people joke about it and Kyle goes along with it even though there is nothing funny about Chiari.

Keep Moving Forward

Kyle's alternative to breaking down and falling apart is just being Kyle. He is a 12 year old kid that loves to tease his sisters, avoid house chores, and play Xbox and Minecraft online with friends. He still plays with fire (yikes, I know). He still makes dinner for the family when it is his turn. He still helps out his dad at the shop.

I think he doesn't fall apart because he believes he will be ok. He believes everyday will be a good day. He doesn't concentrate on his pain or discomfort. And even though he often tells me his head hurts or his pin sites hurt he never takes any meds. I think he just likes me knowing how he is feeling. I think he likes me hugging him and letting him know I am here for him for whatever he needs.

Shannon's Hope Foundation

Please take a moment to read about Shannon's Hope Foundation, a non-profit organization devoted to increasing awareness on Chiari Malformation.

Living With a Rare Disease

Welcome to the First Chiari Carnival Celebrating Rare Disease Day

Hello everyone. I am Kyle. I am 12 years old, in middle school, achieved green belt in Karate, and I have Chiari Malformation.

Chiari Carnival: Chiari is typically a birth defect that goes unnoticed for years or decades. When did you receive your diagnosis and how old were you?

Kyle: I received my diagnosis in September 2011 and I was 11 years old at that time. My parents knew something was wrong for over a year before we found out my condition. It took many, many trips to the doctor before being properly diagnosed. I had a MRI in September 2011 and that is when we immediately got a call from a neurosurgeon.

Chiari Carnival: Many Chiari patients have been diagnosed with other conditions. Do you suffer from any other conditions besides Arnold Chiari Malformation?

Kyle: Yes, I was born with Klippel Feil Syndrome too. So, my anatomy is different from normal people. Basically, my cervical vertebraes are deformed. We also found out I have only one kidney but that doesn't have anything to do with Chiari.

Chiari Carnival: Patients who have had decompression surgery are referred to as zipperheads. Are you a zipperhead and have you had any other Chiari related surgery?

Kyle: Yes, I'm a zipperhead. My decompression surgery was in November 2011. It was scary for me to find out I have Chiari then have surgery in less than two months later. But my case was severe. I was getting so weak and partial paralyzed. My procedures included decompression surgery then I was in traction for a week (to try to straighten my cervical vertebraes a bit). Then I had the fixation surgery (implants for fusion) 8 days after my first surgery which puts me in a halo for at least six months.

Chiari Carnival: Western medicine focuses on medicine and medical procedures. However, many people benefit from ‘alternative’ therapies. What is your favorite non-medical/non-medicinal treatment for symptom relief?

Kyle: Before my surgery, I had to lay down all the time. I didn't have strength to do much and because my parents and I didn't know what was wrong with me until September 2011 I didn't take many medicines besides Tylenol for my headaches and albuterol for my breathing (thought I was suffering from asthma but it happens to be a Chiari symptom). I don't have a favorite non-medical treatment for symptom relief.

Chiari Carnival: Since Chiari affects the brain and nervous system some patients report symptoms which are difficult to describe. What is your most bizarre symptom?

Kyle: I was getting weak on the right side of my body and I couldn't explain how it felt. My parents thought I was just giving up using my arm and they thought I needed to work out or lift weights to build muscle. But I couldn't explain why I couldn't use my arm, or why my right leg was dragging. I guess because I didn't know what was going on. Then I would fall all the time. My parents would look at me and ask why did I fall and I would tell them I tripped but they were confused because nothing was in my way to trip me. I would just lose all feeling for a moment that caused me to drop to the ground. The loss of control embarrassed me and frustrated me.

Chiari Carnival: Dealing with pain and symptoms day after day can be very challenging and many state that their loved ones just don’t understand. What would you like others to know about living with Chiari?

Kyle: I don't like to complain but....it sucks. People expect everyone to be able to do the same things. When I say I can't do something it IS because I CAN'T not because I don't want to. I want to feel good and do crazy things with my friends but I'm limited. Chiari changes you and I don't know if I will be able to go back to doing stuff that I use to do. Such as going on roller coasters, or jumping on trampolines, or snowboarding, or sparring.

Chiari Carnival: Attitude plays a huge role in feeling healthy. What activities do you engage in to keep a positive attitude?

Kyle: My friends, my neighbors, my family and all of my parents friends have said they have never heard me complain. (I do vent to my mom though). I just want to feel better and not have surgery again. I'm still in a halo and I want to get out of this halo and go back to school and be with my friends. Unfortunately, I'm expecting my neurosurgeon to tell me more surgery is to come because some of my symptoms are returning.

For now some of my activities are playing video games with my online friends from around the world;  flying kites at the park with my dad; go on walks with my mom and sisters; sweet-talk my mom in taking me to Starbucks; go to the movies with my cousins; and my not-so-fun activity of doing homework.

Chiari Carnival: A great quote can remind us to keep the faith during those dark moments in life.  Can you share a quote or saying that provides you with inspiration?

Kyle: "Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning." - Albert Einstein

Chiari Carnival: On behalf of Chiari Carnival thank you so much for sharing some of your Chiari journey with us. 

Kyle: No problem! I'm happy to be a part of Chiari Carnival.

My mom helped me with this post. Thank you so much for stopping by and reading my story.

Chiari Awareness

Taken from Chiari Awareness Flyer

Chiari affects about 1 in 1,000 people. Most common symptoms are severe headaches, balance problems, pain and weakness in the arms and legs, trouble speaking and swallowing.