I am not very good with the anything that revolves around me, so I'll try to keep this as complete and concise as possible.
My name is Steve (Stephen) and I was born in October 1989. I have suffered from chronic pain for most or all of my life (at least as early as when I was in a crib). My scoliosis was missed until adulthood and I was told that I have growing pains. Although I missed out on most of my childhood because of the additional pain that I experienced whenever I played, my problems went undetected. In second grade, I developed headaches, mild at first, but steadily growing. I was told that they were nothing, I just needed to wear my glasses more. The headaches continued to get worse and my schoolwork and concentration began to suffer. By tenth grade, I was taking Ibuprofen/Advil/Motrin by the dozens and did permanent damage to my stomach. So, I switched to acetaminophen/paracetamol/Tylenol, but three 500mg extra strength Tylenol every two hours did little beyond causing my liver to swell. Luckily for me, the school nurse realized that I was drowning and threw me a lifeline by forcing my parents to take me to my family doctor, who ordered an MRI, which on January 18, 2006, showed a 6mm * 8mm mass inside my brainstem (prime real-estate).
At 8:57PM on January 18, 2006, I was talking to my then girlfriend, now wife, when my call waiting beeped. It was my doctor. She spent half of an hour explaining everything to me, consoling me, and making sure I didn't lose hope. She then proceeded to spend 45 minutes talking to my father on his phone.
The MRI didn't include contrast (Magnevist), so it was repeated on January 24, 2006. No definitive answers.
I had no definitive answers because the spot on the MRI could have been any off the following:
Malignant tumor, benign tumor, cyst, gumma, MS plaque, scar tissue
The reason that scar tissue was "on the menu" is because my grandfather had physically abused me several months prior. It is my belief that my CPS is caused either by my brainstem glioma or having my head violently and repeatedly thrown against a cinderblock wall while his daughter, my mother watched. I didn't get it checked out then because the police took over an hour to respond and my "mother" was too busy blaming me to get me medical attention.
I had a followup MRI on April 7,
2006, which was inconclusive. I was supposed to followup in six months, but by then I was in a terrible prison like fostercare shelter.
From August 2006 until October 2007 (when I turned 18), I was in fostercare and my symptoms went undocumented as I got worse and worse.
As an adult, they finally stayed treating me Luke a human being and started prescribing things for the headaches, like hydrocodone/Norco/Vicodin, Topamax/topiramate, Imitrex/sumatriptan, Relpax, Maxalt, etcetera. They also referred me to a neurologist and got me a followup MRI. Because the tumor had grown, I was referred to a neurosurgeon at Hershey Medical Center. He was an ass.
My wonderful PCP got me a "second opinion" from Dr. Arnold G Salotto at Wellspan Neurosurgery in Gettysburg PA. He was amazing and at my first appointment on April 1, 2008 (April Fools!) diagnosed me with DIPA/DIPG (Diffuse Intrinsic Pontine Astrocytoma/glioma).
The last five and a half years have been a roller coaster that I'll discuss another day.
June 14, 2014
I apologize for not updating this part of my site for a while, but I've been fighting with the incompetent, ignorant, rude imbeciles who run CYS (Children & Youth Services) for over six months concerning my wife's and my need for prescription opioids. I've been told that they've never gone after people as hard as they've been going after us, that includes heroin addicts and crack whores. They routinely lie on court paperwork, leak confidential records, commit perjury, and they're constantly change their story & accusations. We've had to prove that we are ill enough to require opioids, but not too ill that we can't care for our daughter. Thankfully, our family doctor has not abandoned us. He knows how much these medications help us and he knows that our daughter is well taken care of. Thankfully, my state has never had a law allowing children to be taken from disabled parents and there are federal laws (i.e. Americans with Disabilities Act) that protect us, slightly. Unfortunately, we still have to prove that our medical conditions don't prevent us from caring for our daughter. Aside from our doctor, we have our almost useless lawyer who can't schedule a meeting, and a great subcontracted (not a CYS employee) parent educator who isn't afraid to tell the truth, even if it isn't popular and even if it contradicts her conclusions. We've also been complying with their ridiculous WEEKLY urine drug testing (costs taxpayers $100/test per person). I really wish that they'd switch to saliva testing, or better yet hair testing, which covers the last 3 months (more, if you're willing to pay for it) instead of the 2-3 days that UDT (urine drug testing) covers. I did the math once and found out that you could buy a VERY nice car with the money that they've spent harrassing us and violating our rights. Privacy is a thing of the past.