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......

Painful Pin Sites - Upcoming Procedure

Kyle has been experiencing a lot of pain for the past month. He has been having headaches almost every day plus major pain at his four pin sites. His halo has been making clicking noises too but I couldn't figure out where the clicking was coming from. Plus Kyle has been having me help him lie down in bed at night and help him get up in the morning. He says he feels his halo shift every time he lies down or gets up and it hurts. My thought is Kyle is still growing. He has been in his halo for six months so the vest is tight and the pins are loose. For the past three weeks I have been emailing his physician assistant about these issues. Finally, we went to Oakland to see his doctor on Friday, (5/4). Unfortunately, we didn't get good news.

First of all, Kyle had a CT scan on Monday, (5/1) to check his implant/fusion. So, his doctor used this scan to give us the bad news/good news.

Good news - The fusion is improving

Bad news - The fusion isn't complete. Kyle will not get his halo off for a few more months.

Good news - His pin sites are clean, his halo vest is clean

Bad news - The halo pins are all loose. Kyle is in pain because the pins are rocking and scraping his skull. They cannot be tightened because the sites (the skull bone) are weak. If his doctor tightens the pins they will poke thru his skull.

Bad news - The pin sites must be changed immediately. To change his pin sites he has to be under anesthesia. So, Kyle is scheduled for surgery on Tuesday, (5/8).

Pray all goes well.

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.

Headaches

Kyle says he has been having headaches/pain in the back of his head. He says the best way to describe it is like an ice-cream 'brain freeze'. They happen several times a day. Definitely something to ask his doctor about when we see him in a couple weeks.