danfamily.jpg (18442 bytes) Danny H's Story & see update from 2007

   Danny Hutnik's Story, written by his mother, Nicole : 

Daniel was born nine weeks premature with difficulty swallowing.  Danny came home from the hospital but seemed to have a chronic cough.  Several months later and several bouts of pneumonia, they finally admitted him into a long term hospital care facility.  My mother cared for our five year old son Mikol so I could stay with Danny at the hospital.  David would work during the day and visit with Danny and I in the evening for a short while.  Danny and I stayed there for three months.  Neurologists, Pulmonary Specialists, and Gastroenterologists were all involved with Danny's diagnosis and treatment.  They said that Danny's brain was sending the wrong signals to his throat and that his throat muscles cannot strengthen.  The condition caused him to aspirate foods and liquids.  They decided to place a nasal gastric tube for feeding purposes.  We went home and waited for surgical placement of the gastrostomy tube (G-Tube).  After the placement of the G-Tube Danny hated to be fed.  By the time he was a year and a half I found him sucking on the tubing that would normally be placed in the G-Tube.  To make a long story short . . . you need a powerful sucking ability to get the liquid out of the tubing . . . when the liquid came out, it was a very small amount . . . Danny learned how to compensate for his disability and within a year and a half we asked to have the G-Tube removed.  We thought Danny's difficulties were over.  We were wrong.

Over the six months, prior to the Chiari diagnosis, I watched Danny change.  Nothing specific I could put my finger on, but a change nonetheless.  Slurring of the speech caused from what seemed to be excess saliva in his mouth.  I chalked it off as being caused from several ear and sinus infections he had.  Then the headaches - Quite painful and immediate.  He tolerated them well with Tylenol and rest.  The headaches concerned me, but I have frequent migraines and assumed that one day they would diagnose him with the same.

Our Hawaii trip on April 24, 1998:  While in Hawaii, Danny dropped to the kitchen floor quite hard.  This concerned me but my husband tried to relieve my worries by stating that Danny had very little sleep.  There is such a time difference between Hawaii and Ohio that Danny was probably exhausted.  This happened again that same day but again I was reminded of our earlier conversation.  He felt dizzy one other time before we came home from Hawaii on May 3, 1998.  The following week I took him to the pediatrician's office to air my concerns about Danny's behavior.  He was diagnosed with strep throat.  The doctor on duty said that Danny was probably getting over a "flu bug" and to just watch him.  This was one of those "fluffy answers" that didn't set well with me.  I decided to watch him more carefully.  On Mother's Day, Danny again lost his balance and fell into Grandma Hutnik's kitchen counter.  This was the "straw that broke the camel's back."  I wanted more answers.   Again I took him back to the pediatrician's office the following day voicing my concerns.  Dr. White ran a battery of tests and suggested that Danny have an "MRI with contrast."  I was temporarily relieved in knowing that the test would rule out my fear of a tumor.  The following Thursday Danny had the MRI.  Friday, Dr. White called.  He said that Danny's MRI was not normal.  That he had a condition called Chiari Malformation. . . .  I heard Neurosurgeon . . . . New promising surgery techniques . . . And I went numb.  I called my husband and my mother . . . and cried.  Then I hopped on the Internet and went searching for information.  I called Dr. White back and asked what Type of Arnold Chiari Malformation (ACM)?  Danny was diagnosed with Type 1 ACM (A.K.A. hindbrain herniation).  Thank you, Dr. White, for saving our son!

Arnold Chiari Malformations occur in the region where the brain and spinal cord join.  The lower portions of the brain (cerebellar "tonsils") are located lower than normal protruding into the spinal canal.  Normally they do not. The cerebellar "tonsils" would normally be round but become elongated when herniated.  This misplacement -- herniation can cause many different
symptoms including:  headaches; dizziness; inability to breathe and/or swallow; paralysis; blindness; deafness; short-term memory loss; etc."  In other words, the herniation of the cerebellum presses on the spinal cord causing all of the above symptoms. (Danny's cerebellar tonsils are applying pressure to the brain stem.)

The local neurosurgeon at Rainbow, Babies, and Children’s Hospital in Cleveland, Ohio evaluated Danny on Monday, May 18, 1998, and scheduled his decompression surgery for Friday, the 22 of May.

There are no guarantees with this type of surgery.  The surgery will not correct Danny's condition, but will hopefully relieve some of his symptoms.  It is not an elective surgery and is done to save the patient's life, including Daniel's life.

Friday the 22 of May, the neurosurgeon made a six-inch incision at the base of the neck moving up toward the skull.  He removed some Daniel's skull to make more room for his brain.  He enlarged the opening at the bottom of the skull and top of the spine.  The membranes (dura) that surround the spinal cord and cerebellum were cut and a triangular piece of cadaveric pericardium was stitched there to create a large spinal fluid filled space behind the cerebellum, brain stem and spinal cord.  Scar tissue was removed to facilitate fluid movement around the brain.  The neurosurgeon hopes that this will give the cerebellum room relieving pressure from the spinal cord.  He told us that Danny is a very lucky boy as the compression on his spinal cord was more significant than he expected.  He said that Danny must have a guardian angel watching over him.  The surgery was approximately five hours in length.

The first 24 hours were spent in PICU (Pediatric Intensive Care Unit).  When Danny was placed in a private room I asked that he be removed from the morphine.  Morphine, although it helped him tremendously with the initial several hours post-op, (in my opinion) should have been discontinued after 16 hours.  Morphine causes a burning sensation when the patient urinates.  Danny refused to urinate after the removal of the catheter so they replaced it.  If I remember correctly, the nurses are required to replace a catheter if the patient refuses to urinate after 6 hours.  The catheter was removed again only to find that Danny would hold his urine an hour past the "deadline." This time they waited just long enough for him to go on his own.  The next 24 hours was spent "walking on eggshells" coaxing Danny to "go potty" before the "deadline."  Urinating became easier and he finally went on his own.

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When we left Rainbow, Babies, and Children's Hospital in Cleveland, 5 days after surgery, he was still exhibiting dizzy spells.  By the seventh day post-op, only a few spells remained. We hope that this will continue to lessen as time goes on. There are medications available to relieve dizziness if it continues.  We hope medication won't be necessary. The "drop spells" that Danny had in Hawaii and at Grandma Hutnik's home has not been present since surgery.  We are hoping that they won't return for a long, long time! Danny's future looks brighter. The surgery went well and the neurosurgeon feels confident about Danny's future.  We thank the Lord daily for keeping Danny safe!

Mike and Lauren (Danny's brother and sister) are very glad to have him home!  We are feeling quite blessed by how much support family and friends have given us during the past six months!  Special Thanks to Spring Garden Waldorf School's Families and Faculty!!!  They went over and beyond the call of duty!!  They are Our Guardian Angels here on earth!  We truly feel lucky to have so many people in our lives that care for us so deeply!  THANK YOU!!

Today is September 11, 1998, and over-all Danny is doing quite well.  He has exhibited dizzy spells that cause him to lose his balance, but nothing like the "drop attacks" he had before.  Last week the dizziness caught him off-guard, he reached for the wall to stabilize himself, but misjudged the distance and fell on some toys.  We live moment by moment . . . day by day . .
. enjoying life . . . and thanking the Lord for blessing us in so many ways!
Nicole Hutnik

Update: November 24, 1998

We decided to home school the children this year as Danny still exhibits residual dizzy spells and continued slurring of his speech.  He will be seeing a pediatric neurologist at the beginning of December for the residual Chiari effects.  Our family misses Spring Garden Waldorf School and the WONDERFUL people there!  Thank you again S.G.W.S. family . . . you are in our thoughts daily! 

Last, but most definitely not least, THANK YOU Chip for everything!  You are a
God-Send - Our angel here on earth!

Love,
The Hutnik Family
 

Update:  June 8, 2007 

We fought for three years after Dan’s surgery to get a MRI.  Afterward, they said he is fine and Dan’s symptoms of dizzy spells and bowel difficulties had nothing to do with Chiari.   

I have had trouble all my life, but the doctors claimed this, that, and everything but Chiari.  In January I began to have issues again, but hid it from family and friends.  In February my daughter, Lauren, was misdiagnosed with Pseudotumor Cerebri for which I immediately told them I believed it was Chiari causing the pressure.  They agreed with the Chiari diagnosis, but claimed it wasn’t the Chiari causing the pressure build-up.  (Don't ever forget - Mothers know best!)   

It took my son's neurosurgeon not responding to my questions that finally sent me over the edge.  I began searching for a specialist and luckily was directed to Dr. Bolognese at North Shore Long Island Jewish Hospital’s The Chiari Institute in New York.  All the while, my eldest son is completely disabled with alleged migraine headaches.  With everyone's MRI scans in tow (my 11 yr. old scan, Mike's 2 wk. old scan, and Dan's 6 yr. old scan), we went to New York to meet Dr. Bolognese for Lauren’s appointment.  While there, Dr. Bolognese diagnosed me with Basilar Invagination (BI) and said I was the parent who shared these conditions with my children.  I wish I would have had a questionnaire prior to their birth as I would not have checked the boxes regarding these issues - <giggle>!   

The appointment with Dr. Bolognese was AMAZING!  He looked at Dan's 6 yr. old scan and said that he was completely blocked on the right side and that he "can fix that."  This is the SAME SCAN our local neurologist and neurosurgeon said “was fine” and that the symptoms he exhibited had nothing to do with the Chiari.  We know Dan has Chiari and Basilar Invagination.  After the tests are completed in July, we believe he will be diagnosed with Tethered Cord Syndrome too.  Dr. Bolognese wants to see Dan when Lauren comes in for her de-tethering surgery.  He also looked at Mike’s scans and confirmed Chiari and BI. 

Dr. Bolognese final diagnosis for Lauren:  Chiari I, Tethered Cord Syndrome, Syringomyelia, Basilar Invagination, and Pseudotumor-LIKE Cerebri (NOT true Pseudotumor).  She is scheduled for TCS surgery July 10 in New York.  At that time they will see Mike and hopefully squeeze Dan and me in for our evaluations.  Pray for us.
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Just in case you don’t know this already, Chip is a TRULY AMAZING MAN!  He continually gives SO much of himself to his fellow man – He truly is OUR guardian angel here on earth!  I am truly honored to know him!  He is family – Not in the traditional sense – But my heart, mind, and spirit claim him as family!  Talk to Chip for five minutes and you’ll know why I feel the way I do about him!   

May tomorrow bring you much love, kindness, relief, compassion, and understanding!

With kindest remembrances ~ Namaste,
Nicole

Nicole@pristinewellness.com 

Lauren 12 yrs old - Chiari I, Tethered Cord Syndrome<TCS>, Pseudotumor-LIKE Cerebri, Syringomyelia, and Basilar Invagination - Surgery for TCS coming up on July 10
www.caringbridge.org/visit/laurenh

Dan 15 yrs old - Chiari I malformation, decompressed in '98, continued herniation on the right side, Basilar Invagination, and most likely Tethered Cord Syndrome

Mike 21 yrs old - Chiari I malformation, Basilar Invagination, and most likely Tethered Cord Syndrome

http://www.caringbridge.org/visit/thehutnikfamily

 

 

 

PristineWellness@netscape.net

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