Spinal Cord Swollen....AGAIN!!

Kyle still vomits every day, he still can't sneeze normal (I know this sounds weird. I'll explain in a bit), he still has headaches daily, has high blood pressure, his voice is still muffled/hoarse, and he still does not breathe in his sleep. Frustrating!!

By-the-way, no word from the speech therapist since the barium swallow test. I didn't think we would anyway. The test was a waste of time because I know there is nothing she can do.

So, remember on Nov. 5th I posted that one of Kyle's neurosurgeons mentioned that Kyle's brainstem is compressed. He based this on Kyle's Nov. 2nd CT scan. He told us the odontoid (bone) is the cause for the severe anterior compression of the brainstem. Based on Kyle's images it appears the compression is on or near the medulla oblongata area of the brainstem. So I researched what the medulla is responsible for and I read it contains the cardiac, respiratory, vomiting, and vasomotor centers and deals with autonomic, involuntary functions, such as breathing, heart rate and blood pressure. Yikes, right? So, we had to wait from Nov. 5th to Dec. 9th for another MRI to be done.

So, Kyle had a MRI on December 9th. (Kyle had his birthday a week before this appt....he's now 13).

We met the neurosurgeons and team on Dec. 11th. The neurosurgeons immediately started asking us if Kyle had fallen recently. Which he hasn't. Kyle hasn't done much for months because he feels so yucky. Then they tell us they are not sure why BUT Kyle's spinal cord is swollen.....AGAIN!! At this point I wanted to scream 'I knew it!' but I was thankful knowing Kyle would be prescribed steroids again to fix this problem. It hurts me to think about how long Kyle has been suffering from this swollen spinal cord. I have no doubt that it has been swollen since before the halo was removed. Now, this doesn't mean he is out of the woods for the face-splitting procedure. The doctors mentioned the procedure again but says they will address the issue next month after his spinal cord heals. For now, they put Kyle back into a full brace and he is on steroids for about a month.

SNEEZING ISSUE: For some reason when Kyle has to sneeze he basically sneezes inwards and then it causes him to vomit. He cannot launch a sneeze outwards like a normal person would.

Swallow Test

Kyle had a barium swallow test on the 15th because of his long term difficulty with swallowing. I think the speech therapist wanted to see if he has reflux and if he aspirates.

Kyle has explained several times to his doctors that solids get stuck in his throat so he pushes it down with three hard swallows and a sip of water. Many times he ends up vomiting because the food will not go down no matter how hard he tries to swallow. The speech therapist breifly mentioned that his trachea is partially paralyzed. I haven't confirmed this with the head & neck surgeon yet but obviously something is wrong because his swallowing isn't normal.

His speech therapist doesn't want him to swallow water with food. She feels Kyle could possibly aspirate the food and water. She says water slides down too fast so she wants him to only swallow foods that are moist, or swallow with a thicker type liquid such as a smoothie so the food and liquid would go down slower. Kyle didn't agree with anything the speech therapist said; even though it makes sense but he's the one that has to deal with it.

Anyway, the xray did show food getting stuck in his throat and it did take him about 3 hard swallows to get most of the food down without any water to push it down. Luckily, we did not notice any reflux.

More on Kyle's Sleep Apnea

Kyle was scheduled for another titration sleep study on Halloween but we re-scheduled the overnight sleep study for Nov. 2nd. That way he was able to see his baby sister trick-or-treating!

So on November 2nd, Kyle was tested on a BiPap AutoSV Advanced with heated humidifier by Respironics. The doctor called us on November 6th with the results. He said that the standard CPap and BiPap machines didn't work well for Kyle and that this machine was his best option. However, even with this machine his results are still abnormal. Here's the breakdown we received verbally from the doctor from the sleep lab:

Home Diagnostic Sleep Study on Oct. 16th with no breathing equipment:
101 apneas/hour
Average oxygen level low 80s with drops to low 60s

Sleep Study on Oct. 20th with CPap and BiPap:
55 apneas/hour
Average oxygen level 92 with drops to 83

Sleep Study on Nov. 2nd with BiPap AutoSV Advanced:
30-35 apneas/hour
Average oxygen level 94.9

Clearly, the BiPap AutoSV Advanced machine is necessary. On Nov. 6th, the doctor from the Sleep Lab wrote a prescription for the machine and was told a machine would be delivered to our home. We anxiously waited for the delivery of the machine, however, it never came. Instead we unexpectedly received a letter on Nov. 14th (but dated Nov. 7th) from our insurance company that we are not covered for the machine. Frustrated that it took a week for the denial letter to reach us, all the while Kyle suffers. My husband immediately called the sleep lab for a copy of the prescription and I searched for medical supply companies that rent the machine because Kyle has waited long enough for his therapy.

We ended up renting the machine from a reputable company in Nevada and received it Nov. 17th. Their web address is medtoyou.com. Awesome service and fair prices.

-Christy (Kyle's mom)

What? ....... Split Kyle's Face Open?

Kyle had a CT Scan on Nov. 2nd, one month after the removal of his halo. Then Kyle had an appointment to see his Neurosurgeon on Nov. 5th. We don't have all the details yet. I pretty much was stunned when the doctor told me about another possible surgery for Kyle. MRI is scheduled for Dec. 9th and we will have another meeting with the neurosurgeons after that.

The bad news:  Kyle's brain stem is still compressed. Hence, the symptoms he still has:

Central sleep apnea
Hoarse voice
Partial paralysis in trachea
Difficulty swallowing
Shortness of breathe
Weakness in arms
Chronic vomiting

The doctors briefly mentioned the next procedure but to get to the bone that is causing the issue they would have to split Kyle's jaws and tongue in half. As soon as I heard that I went mentally blank!

Sleep Apnea Diagnosed

Sleep Apnea Confirmed.

Sleep apnea is a condition where you stop breathing while sleeping. There are two main types of sleep apnea, Obstructive and Central. In obstructive sleep apnea you cannot breathe because your airway is blocked. In central sleep apnea you do not try to breathe because something is wrong with your brain that controls breathing during sleep. A person is considered to have sleep apnea when they stop breathing for 6 or more times per hour.

Kyle's lab test showed he stopped breathing 101 times per hour

The following is an excerpt taken from a post found on the Web:

"My son passed away at the age of 8 on March 29, 2008. His cause of death is listed as "complications due to Chiari Malformation Type 1". Due to sleep apnea that was caused by the Chiari, my son simply, slowly stopped breathing and passed in his sleep."

This scares me.

There are many, many web site discussions over the link between Chiari and Sleep Apnea. Of course, I didn't know much about sleep apnea until my son starting showing signs of this disorder. So it quickly became my mission to research sleep apnea for Kyle. Not sure why Kyle's sleep apnea rear its ugly head months after Kyle's decompression surgery but I'm determined to find out.

If you suspect sleep apnea - get tested immediately because the process to getting a machine for sleep apnea takes time.

For Kyle, he met his primary care giver on Oct. 10th. Then he referred Kyle for a home sleep study. We had to wait a week for an appointment with the sleep clinic to pickup a home diagnostic device. Kyle did the home sleep study on Oct. 16th. We returned the device the next morning. Kyle's Head and Neck Surgeon called us with the results Oct. 18th and told us Kyle has severe sleep apnea. The Sleep Lab Clinic called us the next day to schedule on overnight sleep study at their lab for Oct. 31st. We didn't want to wait so we were referred to an outside clinic for Oct. 20th. Oct. 20th he stayed the night at a sleep lab and did the titration study. Oct. 24th our Sleep Lab Clinic calls and tells us Kyle's sleep apnea is central and obstructive so they want to do another titration study on Oct. 31st for a  Bilevel CPAP Auto Servo-Ventilation. So while we are waiting for that appointment, we requested a loaner CPAP machine. The doctor doesn't think the CPAP will do much good because she believes Kyle will need the ASV, but we received a temp CPAP machine today with the pressure setting of 7 based on his results from Oct. 20th.

Sleep Apnea?

Kyle still has something seriously wrong with him.

However, he amazes me. He is doing well (supporting his head) with his halo off. He has 2 neck collars and 1 neck collar/brace (that insurance does not cover, grrr) but Kyle doesn't like them. Keep in mind, Kyle has Klippel Feil Syndrome too so his neck is short, and apparently you need a neck for such devices because none of them truly fit Kyle.

Anyway, Kyle is just happy to be able to put his head on a pillow. However, Kyle still vomits every day. His voice is still muffled and hoarse. He still pauses in his breathing for long periods of time, consistently, while 'trying' to sleep. I've mentioned this to his neurosurgeons several times throughout the months but nothing came of my concern. So I got fed up and emailed his regular doctor at 1 o'clock in the morning on October 10th. At 8am his pediatrician told me to come see him that afternoon. At that appointment, Kyle's doctor scheduled Kyle for a sleep study to check for sleep apnea; also referred Kyle to a Head and Neck Surgeon to check out his throat.

October 12th, I took Kyle to see the Head and Neck Surgeon who used a scope down Kyle's nose & throat to see his voice box. He said Kyle's voice box cartilage is severely swollen and weak. So swollen that it is obstructive and flaps when Kyle breathes in and out. He believes stomach acid (reflux) has inflamed this area. He's not sure why the cartilage is as weak as it is but he suggested to start with medicines to reduce Kyle's stomach acid (which helps with his vomiting issue). If his voice box does not heal then Kyle will need surgery BUT the doctor said it would be an extremely dangerous and difficult surgery because of Kyle's restricted airway.

The Head and Neck Surgeon then told us he will review the sleep study, which is scheduled for October 16th, and let us know if Kyle will need a CPAP or not.

Should know more by the end of this week.

The Halo is Off

Kyle got his halo removed yesterday. He did great!!

His procedure was scheduled for 9am in the OR. Generally, a halo can be removed in an doctor's office but Kyle's neurosurgeon team wanted to removed it in the OR. I'm guessing the issues that occurred in May caused quite the stir so they wanted to be 'a little extra cautious with Kyle'.

The day before this procedure we received a phone call from the Pediatric Anesthesiologist who was with Kyle in May when that procedure went terribly wrong. He spoke with my husband and wanted to make sure we were okay with him being on the team for this procedure. My husband told him yes because he knows Kyle's history. A few hours after the phone call I received an email from the Pediatric Anesthesiologist explaining he will make sure Kyle is safe and comfortable for the halo removal. All of the fuss over Kyle's halo removal procedure does seem a bit out of the ordinary but we are happy that the neurosurgeon team is being cautious.

Kyle only took valium for the procedure. The doctors were planning on numbing each pin site with local anesthetic but Kyle refused. Kyle's dad and I was not allowed in the OR so Kyle took his video camera with him and asked one the nurses in the OR to video some of the procedure, and they did!

About an hour later we were called to meet Kyle in the recovery ward. I was excited to see him so I rushed to the ward and I forgot Kyle's bag of clothes and shoes in the lobby. ;)

He looked good! He had a collar on, hooked up to an IV and monitor leads. His long hair covered his right eye. He looked at me and said, "I feel good". He was rubbing his chest that we haven't seen in 11 months. He looks a bit soft which means he needs to tone up now that he is free from his halo.

The 10 pound halo and vest was now in pieces laying in a bag at the foot of his hospital bed.

The pin sites healed quickly. The doctor put a little circle band aid on the front two pin sites  but a few hours later the sites were nearly closed. The back two sites are hidden by Kyle's hair but they look fine too.

The neck collar they put on Kyle didn't fit. Kyle's neck is short thanks to Klippel Feil. So his doctor told us to go to the orthotist office after he got released from the hospital to have a collar and brace made to fit him.

The orthotics visit took forever! Kyle was hungry and tired but we couldn't leave until he got a collar and brace that fit him. The orthotist worked a long time on customizing a brace to fit Kyle but gave up and started working on a different type brace. It was frustrating but they finally came up with something that worked. However, when we left the orthotist office we walked to a nearby restaurant and Kyle was beyond frustrated with eating with his new brace because the brace pushes under his jaw preventing him from opening his mouth to eat. On the ride home he ripped the brace off.

Halo is Coming Off!

It's time!! The Halo is coming off!!

Kyle has been in the halo for nearly 11 months. November 8, 2011 - October 4, 2012. Decompression on Nov. 8, 2011. Fusion implants on Nov. 16, 2011.

Took Kyle to see his neurosurgeons on Sept. 24th. Explained to them he is still having difficulties in swallowing and his voice is muffled. Told them he is depressed. They agree the halo might be messing with his psyche and his sleep. They assessed him and agree the halo should come off. But they want to see another CT scan first. They ordered him to get a CT scan of the spine on the 25th to check out the fusion.

Two days later, I received an email from them mentioning the scan looks great. The halo can come off. Yahoo!! But they want to do it in the OR .... poo. Last time he was in the OR was a nightmare for a 'simple procedure'.

Took Kyle for pre-op yesterday. He is scheduled to get the halo removed on Thursday, Oct. 4th in the OR at 9am. The plan is to numb the pin sites and give him an oral sedation-type med. Kyle asked if his dad or I can be in the OR with him. No definite answer, so we will see. I'm hoping so and I hope they will allow us to video it.

My 11 yr. daughter says we need to celebrate "4th of Kyle" (because the procedure is happening on the 4th.) Time for a Halo Off party!!

20 Things about my Chiari

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......

Chiari Comforts

Chiari Carnival 6
Chiari Comforts
Therapy, tricks, or tools for symptom management

I asked Kyle how he manages with Chiari. He says, "I just do." I guess he's right. He just does 'cause what else is he going to do? Lately he talks about how much he hates all this. I don't blame him, I don't like it either. I'm often sad for him but I try not to show it. I wait to break down after my house is quiet and everyone is asleep. I watch him sleep from his bedroom doorway. I think about how much he has grown and changed. I think about how hard it has been for him lately.

His symptom management is to rest when he feels yucky. He doesn't push himself too much anymore to keep going. A week ago, I tried to make him go walking with me around the park in our neighborhood. He didn't want to go but I made him. We didn't get too far until he just sat down on the sidewalk and refused to move.  I was thinking, 'great, how am I going to get him back home?' Finally, I had to bribe him. He likes that actually. But I'm glad he refused to walk with me because he is understanding his limits; he knew he wasn't feeling good and unbeknown to us at that time, he was suffering from major swelling in his spinal cord.

Kyle doesn't focus on his Chiari or his pain. Well, maybe a little on his pain. He focuses on Minecraft and Call of Duty. He focuses on things such as how to be in the hot tub/spa without getting his halo vest wet; he focuses on making me take him to get ice-cream or Starbucks. He loves to manipulate me. And I let him. I know he's bored, really. But he's limited on the activities he can do.

For pain, all I give him is over the counter meds. He doesn't like to take many prescription meds (yet). I'm sure as he grows and if things change he will. My favorite pain reliever is naproxen, so I give that to him the most for his neck and head pains. I've used ice packs on the back of his neck too. Not sure if it physically helps but he can rest and relax a bit.

One of his 'tricks' I guess you could say is he chooses to drink his nutrition more than eat. I'm not sure if this is because of the Chiari or because of the limitations to swallowing due to the halo. I mean, he can't stretch his throat (tilt his head back or forward) like most people do to swallow. I'm curious how it will be for him when he gets out of the halo. I'm guessing his fusion might make stretching his throat difficult as well. Any Chiarians want to comment on how it effects them? But he's big on shakes and ice cream and avoids any foods that is hard to chew and swallow.

Other tips he favors: Take Diazepam/Valium right before MRI's; use a wheel chair for an all-day outing; and rest as soon as you feel dizzy.

Take care and stay strong.

Swollen Spinal Cord

Kyle has been sick since July 13th. He's been vomiting every day, he can't and won't eat. All he wants to do is stay in bed. I've noticed he is laboring more than normal to swallow, breathe and speak. I've been trying to figure out what happened; why does it seem his Chiari symptoms are returning all of a sudden. Kyle had a CT scan on the 13th. I was there. Nothing seemed to have harmed him. We saw his CT scan results on the 16th with the P.A. and the results looked good. Of course, the CT scan is mostly to see how his fusion is looking. It cannot show how his spinal fluid is flowing.

The P.A. on the 16th said Kyle's fusion is complete from top to bottom but the bone itself is not thick enough so he will be wearing his halo for at least 3 more months. Devastating to Kyle because he was hoping to be able to go back to school. Anyway, I explained to the P.A. that Kyle has been sick since the 13th but she didn't feel it was anything to do with his Chiari.

Four days later, I take him to see his regular pediatrician because he was getting worse. His pediatrician wasn't in on the 20th so we saw a pediatrician that was available. That pediatrician prescribed Kyle a nausea medicine that cancer patients take.

Four days later, Kyle still isn't better. His voice is nearly muffled. He won't stand or walk. He won't eat. I email a desperate message to the neurosurgeon. First thing the next morning another P.A. calls me and tells me to take Kyle to get another CT scan and then come see her. When we met the P.A. she said no change in the scan from the one on the 13th. So they don't know why he is feeling the way he is. I mention he needs a MRI. We need to know if his spinal fluid is flowing correctly. She calls the neurosurgeons, whom were in surgery at that moment, they tell her do the MRI immediately.

2 days later, we are rushed in for a MRI. Two MRI technicians and three radiologist were there during the session. And Kyle's neurosurgeon was reviewing the images live from his office. Kyle was in the MRI for about 1 1/2 hours. I stayed in the room with my hand on his leg so he knew I was there.

After the MRI we were told to immediately go to his neurosurgeons office. His doctor needed to speak with us.

We get to Kyle's doctor office. It is now after hours. No one is around except us and the neurosurgeon and his team. The neurosurgeon examined Kyle and appeared very upset. He asked us if Kyle has had any accidents or falls. He showed us the MRI images and explained Kyle's spinal cord shows signs of trauma. His spinal cord is swollen and the spinal fluid is pooling at one location. My heart dropped. Kyle, with his muffled voice, says, "Am I going to have more surgery?" "Not for this, Kyle, not yet," says his Dr.

Kyle's doctor prescribes a steroid for him to take for the next 2 weeks. The hope is the meds will reduce the swelling. The hope is Kyle's voice will return. The hope is he will start to feel better.

I want answers.....

I'm so angry and sad and...well I just want my Kyle feeling better. I'm afraid his Chiari symptoms are returning.  And yet he still is wearing the halo, "for three more months", his surgeons say. But in the meantime, Kyle is losing his voice again. He won't eat, he's lying down all down, and he's weak. I want answers. I want to know if his spinal fluid is flowing correctly. I want to know why he is losing his voice again.

Klippel Feil Syndrome

We haven't mentioned much about Klippel Feil in this blog but it is something Kyle lives with as well as Chiari Malformation.

Klippel Feil is an uncommon birth defect. We were told it is not genetic but likely caused by a vascular problem during development. We were told that during my pregnancy (around 6-8 weeks gestation) the blood supply to Kyle got cut off, which could have been for a split second, and it effected his spine, his heart, and his kidneys (for all we know). Of course, if you google Klippel Feil you may find other reasons for it but this is what we were told by two genetic doctors about 12 years ago.

So, before Kyle turned 1 year old we found out Kyle has Klippel Feil Syndrome and his related birth defects included fusion in his cervical vertebrae (absent arch at c4 and deformed body of c3), abnormal ribs, a heart murmur, and one kidney. It wasn't until Kyle was almost 12 years old we found out he has Chiari Malformation.

Kyle is very smart and all boy. He was very, very active until he was 9 years old when he started to slow down and I believe that is when Chiari started effecting him.

How we first noticed something was wrong with Kyle was the obvious issues of short neck, his head tilt to one side, and he could not turn his head (we noticed his shoulders turned with his head.) His doctor though it might be torticollis so he had Kyle in physical therapy to "stretch" his neck. A big no-no once we found out it was a bone issue. My suggestion to parents is to have x-rays done before any physical therapy.

Kyle totally outgrew the tilting of his head and I can't really say why or how but he did. Although, when he is sick or extremely tired I notice a slight tilt in his head. What people notice the most is they think Kyle is shrugging his shoulders upwards. Which of course he's not but because his neck is short it does appear that way. His shoulders roll forward more than they should and looking at his back one shoulder blade is higher than the other. Recently we noticed his upper rib on the right side is protruding out a bit. 

We were told there are a few precautions with Klippel Feil such as no contact sports; avoid extreme flexion, extension and rotation of the neck. Although Kyle tries to defy these rules quite often.

My other main concern for Kyle is his single kidney. Kyle has to watch what he eats and drinks to keep his kidney healthy. He has always had a higher level than normal of creatinine and blood urea nitrogen (BUN) in his blood. His kidney specialist watches his levels closely to make sure those levels stay within the norm for him.

Kyle has not had any surgery for Klippel Feil. Although his Chiari surgery did have to take his Klippel Feil into consideration which made his decompression surgery difficult and slightly different from other people with Chiari.

I love my Kyle with all my heart. I hate that he has many health issues, but he is a very strong young man. Not to mention he is fun to be with and a pleasure to have deep conversations with; ask anyone who knows him! ;)

Creative Chiari

Chiari Carnvial 5
Creative Chiari: Created by Chiarians
Chiari Carnival 5 is about the creative side of us Chiarians

Am I creative? Hmm, my parents think I'm more logical than creative. Perhaps it's because I don't like doing creative writing in school. I actually sit at my desk and pretend to be writing until it is time to turn the assignment in. Then I crumble my paper and toss it in the trash. Or maybe they think I'm more logical than creative because I like reading science and engineering books.

I think my creative side is about experimenting, disassembling and blowing up things, making up games, building virtual environments in Minecraft. How about this: I'm creative in making fun....and making messes.

Powder sugar fight Shaving cream fight
(pre halo)
Water balloon fight

I've been in nerf gun, spaghetti, rice, and whip cream fights too.

I guess that's it. Make everyday great.

Honorary Black Belt

Kyle's Honorary Black Belt from American Shaolin Kenpo Karate

Kyle was honored during American Shaolin Kenpo Karate's annual belt promotion & recognition awards ceremony.  He received an Honorary Black Belt. A first from this Karate academy.

Kyle was five years old when he started training with Grandmaster Castro-Manner and Professor Manner

We don't know if Kyle will ever be able to go back to his training in martial arts but our HOPE is he will (minus sparring).

8 Days in the Hospital

I didn't mean to leave everyone hanging over Kyle's condition. I have been focusing on making sure Kyle recovered from the last procedure. Anyway, Kyle is doing well. As a matter-of-fact he played poker at a party last night with all adults and ended up tying the game with a elder! :)

Seriously though, his 8 days in the PICU had many setbacks. His pneumothorax condition caused him a lot of pain and he was on major meds for 7 of those 8 days.


I didn't leave Kyle's side the moment I first saw him. I wanted Kyle to wake out of his drug-induced stupor so I could talk with him. I was waiting to find out if Kyle was okay mentally. Finally, he awoke. I told him something bad happened while he was in surgery and the doctors had to give him a endotracheal tube. I told him he couldn't speak while the tube was in his trachea. He motioned for paper and a pen. The nurses brought us a clipboard and a pen. He started writing, "This sucks." "I told you this would happen." "Am I going to die?"

His pain was out-of-control. I was hoping the doctors and nurses would keep Kyle asleep for the first night with meds because he was so uncomfortable. For those of you who have been given morphine for pain knows that it doesn't last very long. It works fast but short lived and they were only giving him a shot of morphine once an hour. He didn't rest at all the first night.


The next day the doctor believed Kyle was breathing on his own well enough so the trachea tube could be removed. They told us he would have to go into the OR to have it removed just in case anything happened. I told them they will remove it with me there. They told me I couldn't go in to OR so they decided to remove it in the PICU. They had to bring a lot of equipment to his room, but who cares. I held Kyle's hand the entire time. Kyle was scared it was going to hurt but luckily it went quickly without any major issues. Kyle immediately started to cough and spit mucus and then he spoke, "this sucks!" Everyone laughed and you could feel the tension in the room lift.

That same day, the orders came in to remove Kyle from the IV. What? Why would they do that? I was so mad because it was way too soon. He's still sick. Major air and fluid was still leaking from his lung through his chest tube.

Two days later they realized he still needed the IV.


(ventricular tachycardia: life threatening arrhythmia where the heart beats too quickly)

On May 10th, Kyle had a v-tach. His heart rate was already extremely high the entire time he was in the hospital but on May 10th his monitor went off on high alert and a team of nurses and one doctor immediately rushed to his bedside. They ended up doing an EKG on him and put him back on the IV.

We are still monitoring his heart rate at home, and it remains to stay high. The cardiologist doesn't know what to make of it yet.


On May 11th, Kyle doesn't look good. I made everyone in the PICU know I was angry. Kyle was so pale, weak, and somewhat out of touch with everything.

My husband insisted to speak with the anesthetist to find out exactly what happened in the OR on May 8th. The PICU Nurse Manager setup a private meeting for us.

I then insisted Kyle needed meds to control his pain and I told the doctor no more morphine because Kyle doesn't want it. So they gave him Tylenol with Codeine and Toradol (which worked beautifully). I also insisted to give Kyle respiratory care because he was having a hard time breathing and I didn't allow his nurse do the hourly checks on him if he was alseep because he NEEDED the rest. Then we brought in food from a restuarant nearby for Kyle because he wasn't eating the hospital food.

Before the night was over, Kyle was smiling, eating, and his pain was in control!!


Kyle didn't get to go home until May 15th. From May 11th to May 15th he did well but he had to stay in the PICU just to heal. He was getting x-rays three to four times a day. The neurosurgeons had to make sure his implant was ok and the lung surgeon had to make sure Kyle's lung was healing. The orders came in to stop the suction of the chest tube and do a water seal on May 13th. Then they monitored the x-rays to see how much air was leaking and if Kyle's body would push the air out the chest tube without the suction. The chest tube got removed on May 14th. His x-ray was relatively clear on May 15th. He was clear to go home!!

Simple Procedure Nightmare

Kyle was scheduled for a simple procedure on Tuesday to take out his old pins from his halo and put new pins in. His doctors wanted to do it in the OR under anesthesia. So the day started off with us getting at the hospital early and waiting in the pre-op room for 2 hours. Kyle was very nervous about the surgery and I kept telling him it will be an in-and-out procedure. He said he did not want a tube down his throat, he did not want a catheter, and he did not want to stay the night at the hospital. I assured him that would not happen. But.....

I knew something was wrong based on how long it was taking. When the neurosurgeons finally came to tell me what happened I was beyond upset.

Four hours after they took him to the operating room we find out major issues occurred while Kyle was in surgery. Kyle had a bad reaction to the anesthesia and wasn't breathing. The anesthetist had to take life threatening measures. Major domino effect-one thing lead to another trying to save Kyle. The anesthetist told us (three days later) he was afraid Kyle was going to die in the operating room. So while the anesthetist tried to pump oxygen into Kyle his lung popped a hole which made it collapse and leak air.

My husband and I immediately went to the PICU to see him. It was chaotic. He was tied to the bed and shaking and kicking like crazy. He had a trachea tube so he couldn't talk or scream but I could tell he was trying to. I yelled at one of the P.A.'s. I said something like 'what the hell, I'm so angry'. The anesthetist who popped Kyle's lung came over to me and tried to explain what happened but I wasn't listening. I immediately went to Kyle's side and kept calling his name. Kyle didn't recognize me and I don't think he knew what was going on or where he was. Several nurses and doctors were at his side doing their thing, hooking him up on machine after machine. I started crying and I yelled, "Is his brain ok?" Nobody answered me, they just gave me a terrible stare.


Kyle was suppose to just be given anesthesia through a mask and the whole procedure to change his pins was to take 20 minutes. But Kyle's oxygen level was dropping so the anesthetist decided to open his airway. The anesthetist tried several methods that wasn't working and at some point Kyle became critical where he wasn't breathing. The anesthetist and his team took drastic measures to get Kyle to breath and while they were manually pumping oxygen into him they believe over pressure caused a tear in his right lung. So his right lung collapses and the air starts to leak into his body. Another surgeon then had to put a chest tube in Kyle to vent the trapped air. At this point, they weren't sure if Kyle suffered any neurological damage.

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. :)

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.

When it Rains, it Pours

Chiari Carnvial 3
When it Rains, It Pours
Dealing with difficult people in addition to dealing with a difficult illness

As you all know by now, I'm 12 years old and in middle school. Well, actually I don't get to go to school right now because of my condition so the school district sends a teacher to my home twice a week (who is a very, very nice teacher by-the-way). Anyway, I hate having a condition that prevents me from going to school. I never thought I would say that but school is where I got to see my friends everyday. Sadly, my friends are moving on without me.

So, I'm still wearing this dang halo. And it sucks. It sucks because it is uncomfortable and awkward. But it also sucks when I'm out and about with my mom. Kids always stare and stare and stare at me and in their loud kid voice, "look at the strange boy, mommy". But the moms usually try to hush their kid and force them to move on. Please, look at me! Ask me why I have a halo. Take the time to understand what I have gone through.

I can't say that I have really dealt with anyone difficult. My parents take care of that for me. But I am dealing with a difficult illness. And I hope life won't always be difficult.

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.

Yeah....A Good Sign

So we took Kyle to see his neurosurgeon today for a follow-up and to get the results from the CT scan from last week. Kyle's doctor was impressed with how well Kyle is managing the halo, and he said his pin sites look very good and clean.

The doctor assessed Kyle's strength and expressed Kyle has definitely improved even though Kyle is slightly weak on the left side of his body compared to his right side. Which is a bit strange because Kyle was extremely weak on the right side of his body before his surgeries. Anyway, the fluttering in Kyle's eyes are nearly unnoticeable now...which is a good thing. Two disappointing issues are Kyle's voice is a bit hoarse again and his swallowing is a bit labored again. Those two things may not improve.

So, the results from the CT scan did show 2 very small areas, where they grafted in bone for the fusion of his cervical vertebraes, has finally started to grow. Yeah! And there was no change (no movement) in the 2 bones (I can't remember the name of one of them but it is next to C2) compared to February's CT scan. Yeah! The downside is that Kyle may be in his halo for a bit longer than the original plan of 6 months. But I think he will manage.

Thank you everyone for keeping Kyle in your thoughts. It helps!!

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.

New CT Scan

Kyle had another CT scan today. This scan is to be compared with the previous scan. My hope is this CT scan shows signs that the fusion is taking place as planned. According to the PA they are also looking to see if 2 specific bones have slipped since Kyle was in traction. I tried to understand the x-rays and it does appear one spot is being pinched off a bit preventing his spinal fluid to flow correctly, but I'm not sure. Unfortunately, Kyle's voice is getting hoarse and he is getting tired in the middle of the day which could mean his spinal fluid is not flowing correctly again. We meet the neurosurgeon next week for more information and what to do next.

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.

No Good News

We met with Kyle's neurosurgeon team to get the results from the recent CT scan and we didn't get the news we were hoping for.

Before the PA showed us the x-rays he asked if anything has changed. My husband and I mentioned that we noticed Kyle is laboring to swallow again and his voice is starting to be hoarse again. Then the PA showed us the x-rays and explained why those symptoms are returning. Unfortunately, the bone that they expected to show signs the fusion is successful is slipping and causing his Chiari symptoms to return. Kyle was completely stunned and upset. He was expecting to hear that he only need to wear the halo for maybe another month or so.

The Plan:

So, Kyle will get a series of CT scans again within the next month and we will see his neurosurgeon on March 12th. If the bone is still slipping then Kyle will need more surgery BUT no definite plan on how to handle it. If the bone stays where it is at and starts to fuse then possibly they will leave it and he will have to live with his current symptoms forever.

Time will tell.

Please pray all will be well.

CT Scan

Kyle had a CT Scan today to check out the implant. He has an appointment to see his neurosurgeons next week and they will go over the x-rays with us. I believe the doctors will give us a better estimate for how much longer Kyle needs to wear his halo. Hopefully everything is doing well. Kyle can't wait to be out of the halo and go back to school.


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.

Chiari Awareness

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.

Shannon's Story - Chiari the Killer

I was searching for some meta tags and came across a person's blog about a woman who died from complications related to Chiari. Please read when you have time. 

Excerpt from 'Shannon's Story'
Chiari is a highly undiagnosed condition and is widely unknown and misunderstood.  The longer you delay a Chiari diagnosis, the greater chance of additional neurological damage.  Shannon’s Chiari diagnosis was about 5 years after the onset of symptoms, which initially included severe headaches and anxiety, later followed by depression. After she began to lose the use of her hand and leg, Shannon was finally diagnosed and underwent Chiari decompression surgery. Unfortunately, it did not succeed for her although it apparently does relieve symptoms in about 80% of attempted procedures. During the remainder of her life, Shannon lived in excruciating pain with extreme insomnia plus about 6 other Chiari symptoms. Unfortunately, Shannon was unable to survive with the condition and left us earlier this year (2011). Chiari is not a rare disease, just rarely diagnosed on a timely basis!!!  Chiari affects 1 in 1000 people, and 3 of 4 of those are women.

Photo-1 Week Post-Surgery

This picture was taken 1 Week Post-Surgery

Photo-3 days Post-Surgery

This picture was taken three days after Kyle's second surgery

He Got a Sip of Water

The very next morning after Kyle's second surgery, he got a sip of water. His first sip of water in 10 days. He was happy!!! The swelling in his face and tongue had subdued a bit and he was able to talk. He was in a lot of pain but controlled it with his PCA.

Kyle's Second Surgery

Kyle had to have a second surgery 8 days after the first one. The first surgery was the decompression surgery, then traction for a week to straighten the spine a bit, then the fusion surgery. At first I wasn't nervous about this surgery but Kyle definitely was. For the days leading up to surgery day he kept mentioning how he didn't want to do it. I felt so bad for him.

The morning of the surgery he was scheduled to be in the O.R. at 8am. So a nurse came to get him around 7:30am. The nurse had to move Kyle's entire hospital bed (because he was still hooked up to the traction) to the operating floor. My husband and I went with him. When we got to the operating floor Kyle was moved to a small room to meet the anesthetist. Kyle was crying softly the whole time. The anesthetist was trying to joke around with Kyle but he wasn't in the mood. The anesthetist promised Kyle he would be asleep before anything happened but it didn't work out that way.

Kyle was given medicine to relax him and make he fall asleep but Kyle was too upset to fall asleep. When it was time to take him to the operating room he was yelling at me that he wasn't asleep yet, he didn't want to go. But we had to leave him.

As I walked to the elevator, I had tears in my eyes and I waved slowly to Kyle as he was being moved towards the operating room. I hated that moment.

Then I saw the neurosurgeon team across the hallway from me as if they were going to meet us in the small room. They glanced at me and noticed that Kyle was gone. They immediately came over to my husband and I and asked if we had any questions. Then Dr. Zovickian quickly explained the surgery procedure to us again. I was only half listening because I was sad and worried for Kyle.

The surgery ended up taking longer than the first surgery (prep time was shorter this time). This procedure consist of an implant screwed into the base of his skull and the closest intact vertebrae. Then they took bone from Kyle's hip and added it to the implant to stimulate the growth of new bone. Then he was put into his halo vest and stabilized. Apparently he lost 1/2 pint of blood which was to be expected according to the doctors. (My husband and I donated a pint of blood each a couple weeks before the surgery for Kyle). We got to see Kyle around 7:30pm. The procedure went well but when I saw Kyle for the first time after this surgery, I was stunned.

His face, eyes, and tongue was SO swollen. He looked terrible. His tongue had two large white sores on it and I'm guessing it was from the bite block. He tried to talk to me but I couldn't understand him. I stood in front of him frozen in shock. I was mad, sad and scared all at the same time. He wanted water so bad but there was no way he could drink anything because of the swelling.

I noticed he was laying awkwardly in his bed so I was going to help push him but without thinking I touched the side of his hip and he screamed extremely loud in pain. His entire hip was purple.

Needless to say, the nurses tried to make Kyle comfortable for the night and gave him plenty of pain meds so he could rest.

Fusion with Chari Surgery

One day post surgery....AMAZING CHANGE

One of the most amazing moments was the very next day after Kyle's decompression surgery.

Here's what I wrote I Facebook on Nov. 9th around 9pm: "OMG. Kyle has not been able to use his right arm or hand for over a year because of his issue but just now I asked him to squeeze my hand and he did. I'm happily amazed. So exciting!!"

I still think of it as amazing.

To think that so many of his issues he was experiencing for so long was primarily because his spinal fluid was not flowing correctly. Kyle's voice was another noticeable change. For over a year Kyle basically lost his voice. When he spoke it was barely louder than a whisper. I hate to admit it, but his voice annoyed me the most because I couldn't hear him and I didn't know why. I would yell at him to speak up and poor thing...he tried. But we didn't know at the time why he was losing his voice. So the moment I saw him after his decompression surgery and he spoke to me I was shocked...'cause I heard him! I didn't think his voice would come back but it did!!

Interesting Sites about Chiari

I thought these sites are interesting to share.

Fusion with Chiari Surgery

What is Arnold Chiari Malformation?
 Excerpt from 'What is Arnold Chiari Malformation'
ACM will worsen over time, and since the contest for space between my brain and spinal cord was already causing misery, decompression surgery was necessary. Did I mention that if left untreated, ACM can cause paralysis or death?

Halo Screws

There are four titanium screws to hold the halo in place which are screwed into my skull bone.

No time for blogging

I should have blog'd everyday while Kyle was in the hospital. But as a parent of a child staying in ICU, there wasn't time. Seems odd, right. But so much happened around the clock requiring our full attention.

More to come....
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