Tag Archives: Syringomyelia

Chiari Warrior

What?  How do you pronounce that?  Kee-AR-ee

My sweet and very brave Chiari Warrior  eleven year old son is approaching his year Zipperversary(6.9.15) of having brain surgery.  He was diagnosed with Chiari Malformation and Syringomyelia more than a year ago. Tomorrow we will journey four hours north of here  once again to meet with his neurosurgeon.

While recent MRI images and reports were not what we had hoped they would be, we will remain optimistic and determined to do whatever is necessary to keep him living a healthy and happy life.

“I’m just a normal kid who had brain surgery.”

Rather than write a ‘dumping’ story, I’d like to try and educate readers on this rare brain disorder to the best of my ability as a non-medical professional.

Alternate Names:

-Arnold Chiari Malformation(ACM)

-CM

-Tonsillar Ectopia

-Hindbrain Herniation

Subcategories:

There are 5 subcategories of Chiari ranging from Chiari 0-IV with CM 1 being the most common.  It remains on the list by NORD(National Organization Rare Disorders) as a rare brain disorder and  affects approximately 1 out of 1,000 people.

CM is a structural brain abnormality at the back  of the skull and spinal cord. It is believed that the area at the base of the skull is too small or narrow which results  in the hindbrain(cerebellum) and brainstem being pushed downward into the spinal canal.  Currently, doctors believe this to be a congenital defect, it can also in rare cases be acquired via trauma or injury.  Through my own personal research and meeting countless numbers of people impacted by Chiari, it also appears there may be a genetic link.

Chiari

LT-normal brain  RT-Chiari & Syringo(Syrinx)

Once the cerebellum and/or the brainstem begin to protrude down into the spinal canal, this can potentially create a spinal fluid blockage.   Some CM patients may or may not be symptomatic.

My son’s herniation was measured at over 20mm;  with  significant csf blockage resulting in Syrinx in his spine.

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His actual MRI image showing Chiari

 When there is csf blockage, this can also cause a secondary problem called Syringomyelia(Syrinx) which are fluid like cysts that develop in the spinal cord due to built up pressure. Overtime these cysts can get larger causing nerve damage potentially leading to paralysis if left untreated.

Symptoms:

While every CM/SM patients symptoms vary, the following are some of the more common ones.

Headache|neck pain/stiffness| blurred vision|numbness/tingling in arms or hands|syncope|ringing in ears|sleep apnea|difficulty swallowing|vertigo

My son’s symptoms- seizures|numbness/tingling in arms hands| neck stiffness|coordination & balance issues|

Treatment:

There are a number of variables that factor into the best course of treatment for CM patients. They include but are not limited to:

-drug regimen

-physical therapy

-monitoring of symptoms

-surgery

It is usually a combined team effort with your General Practitioner, Neurologist, Ophthalmologist, Radiologist, Physcial Therapist and Neurosurgeon to determine the best course of action.

It was determined that surgery was necessary for my son based on a number of factors; cerebellar herniation, csf blockage, syrinx  in spine, symptomatic and his age.

 There are a number of ways to perform this surgery and I certainly am not  by any means an expert or one to elaborate in this area.  chiari surgery

The particular surgery that my son had was three-fold:

1.) decompressive suboccipital craniectomy

2.)duraplasty

 3.)cervical laminectomy.

Phew, that’s a mouthful!  In laymen’s terms, his neurosurgeon cauterized the cerebellar tonsils, cut his C1 vertebrae, trimmed part of the base of his skull and opened the dura to alleviate pressure.

too much brain

Prognosis:

There is currently no cure for Chiari however with prompt diagnosis and proper treatment, most CM patients go on to live relatively normal lives.  While the medical professionals continue to further research the origins and best treatments for CM/SM patients,  so much more research and awareness is needed.

My one personal piece of advice from this experience is NEVER ignore symptoms.  Many people kept telling me- “there is nothing wrong with him” and  “you’re crazy.” Listen to your gut instinct!

My son has to live life a little bit differently now(he’s not so happy about not being able to ride rollercoasters or go on trampolines anymore)- it is our hope- it is my hope as a Mother of one brave boy -that through our experience that we continue to provide awareness, assistance and grow to appreciate that their scars  are worn with tremendous pride knowing a Chiari Warrior has won!

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#42  “No Excuses, No Quit”

Additional Resources:

Mayfield Center :

http://www.mayfieldchiaricenter.com

NORD: http://rarediseases.org/rare-diseases/chiari-malformations/

Conquer Chiari:

http://www.conquerchiari.org/index.html

*Numerous support groups on Facebook

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Be well.  

 

 

How the Mentally Strong Handle Hard Times

With recent MRI results coming back on my son, we were disappointed to say the least.  It takes a few days to process the possibility of him having brain surgery for the second time.  What he and I  won’t do however, is sit around and feel sorry for ourselves and do nothing.  We have come to understand that there are certain characteristics that most or all mentally strong people utilize when hard times fall their way.

 1.  They focus on what they can control -even if it’s just their attitude in approaching a difficult situation

 2. They create a course of action-they figure out what the possible solutions are and get to work on what they need to do. They keep moving!

 3.  They practice gratitude-morning|noon|night-it’s tough to see the rainbow through the clouds so they look closer at the small things around them that they are grateful for such as taking a walk with their dog, a call from a distant friend.

4.   They evaluate their priorities-while experiencing loss and hardships, one must always remember as Stephen Covey calls them, the big rocksbig-rocks or what is most important in their lives; it may be their health, family, job etc… take care of the big rocks.

5.  They draw on their inner strength-they remain committed to having a positive outlook and staying the course til the storm calms no matter how long this may take.

It is often in the worst of times that we discover the scars we have endured are  our strengths| the miles we’ve run are our determination to never quit| the difficult situations we face are opportunities to find the positives| and walking through our fears is how we develop the courage to carry on~

fear-doesnt-go-away-the-warrior-and-the-artist-live-by-the-same-code-of-necessity-steven-pressfield

 

 

How Big is your Brave?

“Mom, how big is your brave?”

These were the only words my ten year old son muttered to me on the long drive home from his neurology appointment on April 20th in 2015.  As my heart sank into the pit of my stomach, and with a crackling voice, I responded, “As big as you need it to be, Honey.” He turned his head back towards the passenger window and closed his eyes. 

After almost a year of numbness, tingling in arms and hands, multiple syncope episodes and other symptoms, ER visits, a wrong diagnosis, countless medical tests, and appointments,  he was finally diagnosed with a rare brain disorder called Chiari Malformation(and Syringomyelia); a condition that causes part of the brain to protrude into the spinal canal causing csf blockage, nerve damage and paralysis if left untreated.

 How could this be?  My son!  The sweet, kind-hearted, fun-loving gentle soul.  After talking with the neurologist about what was going on and options for treating it, my son finally forced the bottom line… “So what you are saying is that I need to have brain surgery, right?”  “Yes, that’s right” replied the doctor.

How does a parent prepare their child for this?  How do they steel themselves to such a medical condition?

The first week after we discovered what was the root of his medical issues, I was an emotional wreck.  6-the number of hours of sleep I got that week while my happy-go-lucky boy carried on with his days and normal curious nature; his nights filled with baseball practice, homework,  and games.  At the end of that week of extensive internet research, reading, multiple phone calls and medical opinions; I finally decided to check my emotions at the door and put on my Super Mommy cape and BE what my son needed me to be; strong, positive, and supportive.

Two nights before his surgery as I tucked him into bed and with tears in his eyes, he quietly asked me, “Mom, am I going to die?”  The only thing I could manage to get out of my mouth was, “No, and no matter what, I will be right there  every step of the way.”

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Morning of surgery

A month and a half after his initial diagnosis, my courageous son was wheeled into brain surgery.  On his second day post-op, the physical therapists were astounded at how motivated he was to get up and moving about the halls.  They obviously didn’t know my son as he rarely stops moving!

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Not a great day but still got a thumbs up!

With months of physical therapy, side effects of necessary medication, heavy restrictions on physical activities and getting back to “normal” life, I was reminded of just how resilient kids  are.  While he continues to recover and understands that life has to be lived a  bit different than before,  my hope is that he will embrace his scars as evidence of his strength, courage and inspiration for so many.

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When starting back to school now as a middle schooler, he was a bit apprehensive as to how he   would be received by the other kids when they saw his scar.  Upon entering his first period class, the teacher prompted the students with the question, “So what did you do this summer?”  As any courageous lion would, he quickly stormed in and replied “I had brain surgery!”  I’m pretty confident that topped all.

“Life doesn’t happen to us, it happens for us”

Though the ride on this journey has been a bumpy one for sure, we are beyond grateful for the gifted hands of his amazing neurosurgeon and so many extraordinary strangers who also live our story and to whom we now call friends.

When life taps you on the shoulder in those crucial moments – be sure to pay attention and ask yourself, “Did I allow this experience to  make me bitter or use it to make me better?” 

A Blessed Mom