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.

Depression & Halo Issue

The month of August, depression hit Kyle. He didn't feel like eating. He didn't want to get out of bed. He wouldn't leave the house. He stopped hooking up with his friends online. He suffered from headaches every day. He vomited every day. He couldn't sleep. Part of it is the halo, he wants out.

Kyle's voice became muffled again and he is having major issues swallowing solids again. He's also congested, he's fighting mucus buildup in his throat and chest.

Why is he feeling so bad? He did well on the steroids for his swollen spinal cord. But a week after he was done taking the meds he no longer was ok.

I think, the halo is the problem. It is messing with his psyche. He's been in the halo long enough.....since Nov. 8, 2011.

By-the-way.....Is it possible to outgrow a halo?

To me, it appears Kyle is outgrowing the halo. It appears the halo is pinning him in a slightly bent position now. He won't strand straight. I can only imagine how difficult it is to swallow with a short neck (Klippel Feil) that is fused and being forced down and inwards to his chest now. The halo needs to come off. But sadly it's not up to me.

His neurosurgeons had him get a MRI and CT scan in late August. After reviewing the scans they told us everything looked fine. His swollen spinal cord healed. The pin sites were ok. But they didn't say anything about the fusion. They told us 'see you in November for another follow-up.' What? November? What about getting Kyle out of this Halo? I had to let Kyle know he might not get the halo off until November now. He screams at me. I don't blame him. I scream with him.

So I took him to see his Pediatrician. He needs help for the vomiting, the headaches, the mucus. Kyle's pediatrician puts Kyle on meds for a possible infection. Kyle has been taking amoxicillian, Flonase, Albuterol, and QVar since the first week of September. It's helping slightly with the mucus problem and his headaches eased off a bit too.

Kyle's voice is my alarm to 'something is wrong'. Losing his voice was one of his first symptoms of Chiari, before we knew it was Chiari. So it concerns me when his voice starts to disappear again, as it did in July when he had the trauma to his spinal cord.

Strangely, his voice is now mostly muffled when he is in an upright position, when he is lying down he sounds clearer. Kyle says he feels better lying down. Hmmm......