My Journey
I suffered from what we thought were migraines most of my young life. I had seen a neurologist for years & was placed on several medications to try & control the headaches. As time passed, the symptoms seemed to worsen & finally at the age of 10 I was hospitalized with severe abdominal pain and had lost about 15 pounds. They did a CT scan and found what looked like the tip of a syrinx (CSF fluid filled sac). At that time they were also suspicious that I may have colitis.
Once I was released from the hospital we went back to the neurologist and he sent me for an MRI of my spine. My Dr. called with the results and it confirmed they had found a syrinx (syringomyelia) in my spine running from T2-T12. At that point I was referred to Children's Hospital in Detroit.
After several tests and finally a cysternogram, I was diagnosed with communicating hydrocephalus and then was hospitalized for a drain trial to see if I would benefit from a lumbar shunt. My symptoms improved with the drain and at the age of 11, May of 1999, my first lumbar peritoneal shunt was placed.
Life Threatening Complications
Up until my senior year, at the age of 17, I had done fairly well & at the time, I had only undergone 19 surgeries for shunt revisions. Suddenly, my health quickly declined. Due to numerous hospitalizations & back-to-back surgeries I had missed over 100 days of school. Fortunately, I managed to still graduate! But surgery 2 days prior to graduation caused me to miss my ceremony.
Since then, I have had several health complications. I was diagnosed with Colitis & GERD. In December 2006, I was diagnosed with a Chiari I Malformation; the LP shunt pulled my cerebella tonsils into my spinal cord. Almost immediately an operation called a Chiari Decompression was performed. In November of 2007, two positive HIDA scans & extreme loss of appetite & nausea resulted in removal of my gallbladder. Unfortunately, that did not help & shortly after I was diagnosed with gastroparesis.
So far, I have had a total of 88 surgeries, 85 being shunt revisions & around 70 have taken place in the last 3 years alone. We have tried almost every possible valve combination & my pressures still have not stabilized. In March of 2008 I was switched from a LP to shunt to VP shunt. In November of 2008, due to severe abdominal pain & inflammation, I was switched to a VA shunt.
In December of 2008, an MRI had shown a pituitary micro adenoma (brain tumor). Recently, they found that my LH & FSH levels are extremely low & there was damage to the hypothalamus. I was put on medication in hopes my hormones levels will stabilize.
Creating Change
Yes, I have had my fair share of struggles and obstacles to overcome, but who hasn’t? Rather than taking what could be a negative situation I have tried my best to turn this into a positive one. I truly believe I was given this life for a reason. I am dedicating my time and efforts towards supporting others, advocating, raising awareness and funding for research.
Along with my mother, Denise Bechard, I CO-Chair the Detroit Hydrocephalus WALK and our 4th Annual event will be held on Saturday, August 7, 2010. To me I couldn’t stop there, I had to find a way to make hydrocephalus a household world throughout Michigan. I felt there needed to be a network of support for those who have been touched by this neurological condition and people needed to become educated. In 2009, I formed the Hydrocephalus Association Partner- Detroit MI Support Group.
Why I do what I do:
* I WALK because I want to make sure no infant, child, teen, young adult, or adult ever has to endure the severe pain and struggles hydrocephalus brings to ones life.
* I WALK because I truly believe those affected deserve a better quality of life. Constant brain surgery should NOT be acceptable. We deserve a brighter future!
* I share my story and lend support to show others that they are not alone in this struggle and together we can make a difference. I advocate and raise my voice not only for myself, but for the over one million Americans affected.
I have no idea what the future has in store for me. The one thing that I do know is that no matter what life throws me I will never stop fighting. Giving up is never an option. I am more than hopeful to find a cure, I am determined!
Will you WALK for hydrocephalus?
Registration and Donations are now being taken for the 4th Annual Detroit Hydrocephalus WALK .. Help us reach our goal of $35,000 and progress one step closer to finding a better treatment for hydrocephalus! If you cannot participate please consider sponsoring me, Jennifer Bechard and/or join Jenn's Dream Team.
My Links:
* My blog: Just Believe
* Facebook: Detroit Hydrocephalus WALK fanpage
* Twitter: Detroit Hydrocephalus WALK/Support Group
* Main Detroit Hydrocephalus WALK Donation/Registration Page
For more information on:
The Detroit Hydrocephalus Support Group contact Jennifer Bechard
The Detroit Hydrocephalus WALK contact: Denise Bechard
