Friday, October 21, 2011

How do you know?

posted by Lyme is real, a SpiroChicks contributor

How do you know a pediatric neurosurgeon loves his/her patients? When the dressings are cut away to reveal gauze cut in the shape of hearts!

Rewind to August. Two weeks before her ninth birthday, our daughter started having a rougher time. She had less patience, was easily agitated and had a more difficult time making eye contact. She noticed memory issues. School started and in her words, "Things that used to be easy are taking a lot longer and sometimes I can't even remember what to do."

Things like how to add or subtract.

We noticed a decline in fine motor skills, more confusion, increased cognitive difficulty, dizziness, queasiness, increased headaches, fatigue and falls.

A CAT scan provided the first clue, hydrocephalus in the third ventricle of the brain. An MRI revealed hydrocephalus in the third and lateral ventricles, a Chiari malformation and part of a syrinx in the spinal cord. An MRI of the spine revealed two syrinxes in the spinal cord. A pediatric neurosurgeon joined the team of amazing physicians spanning four children's hospitals who have helped her to be where she is today: endocrinologist, bone geneticist, infectious disease specialist, orthopedic surgeon, pediatric opthamologists, ENT, pulmonologist, pediatricians and now a neurosurgeon. Our daughter was born with cerebral Lyme disease. She was diagnosed three years ago, solving many of her medical mysteries, but leaving challenges still to be faced.

The neurosurgeon explained that the Chiari malformation or hydrocephalus triggered the remaining problems, but which came first? A chicken/egg scenario. Fortunately, early MRIs provided the answer. They were normal, ruling out the Chiari malformation as a birth defect. The hydrocephalus came first. One cause of hydrocephalus is an infection of the central nervous system. Chief suspect: Borrelia.

This week a V/P shunt was inserted into her brain. At the time of her surgery, her cerebrospinal pressure was extremely high. In the surgeon's words, "It was the real deal."

She has been through so much in her nine years and there have been countless instances where we have been in awe of her courage and determination. Other than a few tears in the recovery room, she hasn't cried. Not during physical therapy, not when she tries to get up or roll over. Her one complaint, "I didn't realize it would hurt everywhere."

When she was tiny, she announced after getting a nightly shot of growth hormone, "I am one tough cookie in my wonderwear!"

She still is! Revealed once again when those heart shaped dressings came off today. Hearts meant to ease the hurt. A gift from a gifted surgeon.

Today, her hand has cautiously slipped behind her ear, carefully exploring where her hair has been shaved. A few tears. In three months, repeat MRIs will determine whether more surgery is necessary. We pray not, but know chronic Lyme is a marathon. There will be more challenges ahead. For now, it is enough to take comfort and gather strength from being home. It is time to rest and heal.

In closing, unforgettable words of encouragement from a nurse who shared our joy in her first steps after surgery to explore the Children's Garden. "Look at you, Little O!"


Renee said...

Oh, my goodness. This breaks my heart ~ I cannot imagine what you feel as her parents...She is definitely one strong little girl! A good example for me today as I have been weeping with self pity over my battle with Lyme. Readying this put things into perspective for me. Wishing your sweet daughter beautiful days ahead.

The Professor said...

Great story. I've had hydrocephalus now for 19 yrs. I usually pick out and direct my own shunt revisions, kind of like the Terminator, which I write about on my web site. The adversities I faced then led me to get involved in drum circles. I've now come up w/ lots of new uses of drum circles, and speak about and lead groups in drumming. It's kind of like being on a mission!

Kim said...

Renee, you'll be glad to know our little sweetie had a much better day yesterday. We were starting to worry about her progress so very relieved! Professor, your work is very inspirational!! Music has played a huge role in our family's healing, too!

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Unknown said...

Was the Chiari caused by Lyme? How big was it? I have a 5 mm herniation, and Lyme. Neuro doesn't believe it's Chiari, or Lyme.

Kim said...

You may send an e-mail to

Kim said...

Our neurosurgeon determined the hydrocephalus in the ventricles came first because for the Chiari to come first, he felt she would have been born with it. We know that's not the case because of MRIs when she was two and three. A bacterial infection of the central nervous system can cause hydrocephalus. Lyme is our leading suspect. Both cerebellar tonsils were enlarged. Her right was much larger than the left. I will see if I can find the dimensions in the MRI report. She recently had a Chiari decompression and a small part of the right cerebellar tonsil was removed as part of the operation.

LymeandBack said...

Thanks so much for sharing your story. I have been symptom free from Neurological Lyme for 4 years and have realized how important it is to get the word out there! Its a scary untalked about epidemic worldwide.

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