Hello,
My name is Madison Pulis, I’m 18 years old, and live in DFW, Texas. I’ve been sharing my medical journey for a few months now, on Instagram, but this past fall, my Senior Year of High School, I suddenly fell ill and after 4 months of going to four different hospitals, including Mayo Clinic (which was $12,000 out of pocket), I finally got diagnosed with Chiari Malformation this January. After seeing a few surgeons, I went ahead and had the Decompression surgery which took out part of my skull, C1 vertebrae, and the part of my brain that was falling out of my skull into my spinal column.
I had chosen the type of surgery and surgeon in the hopes that that would be my first and final surgery, but because of complications and lack of medical due-diligence, I now require a second surgery. All of my symptoms from before surgery have come back, and some new ones I’m suffering from:
• Debilitating neck pain
• All-day headaches
• Frequent gagging
• Difficulty swallowing
• Unsteadiness when walking
• Cognitive Issues (difficulty, and sometimes inability, to read/write)
• Extreme Fatigue
• Light and Sound Intolerance
• Weakness
• Episodes of Dizzyness and vision loss
• Breathlessness
My previous surgeon did not account for the instability of my spine, and because I wasn’t told about my spinal defects, nor the risks of a Decompression surgery on a compromised spine, my neck is now dangerously unstable.
A Surgeon in Oldsmar Florida, by the name of Dr. Joel Franck (https://drjoelfranck.com/neurosurgeon/), has accepted my case and is willing to operate on me this summer so that I can go to college. I have been accepted into UT Austin for my major of choice, and an honors program, this Fall. If I do not have this life-altering procedure this summer, I will not be able to attend college, get a job, or pay rent for my apartment in Austin. All of my hard work my Senior Year,
• Doing all of my school work at home, alone, for 5 months
• Catching up to all of my work after Brain Surgery
• Graduating 7 out of 611 children in my Class
• Being Accepted into UT Austin as part of the 6% program
• Being Accepted to the Thomas Jefferson’s Honors Program at UT Austin
will go to waste. I’ll be meeting with Dr. Franck the week of the 16th of June, and I need your help to make that happen and to be able to pay for surgery after that. Although we haven’t received the entirety of the surgical plan, as I’m to receive more testing before I meet him, he called me on the phone and assured me that I would definitely need an Upper C-Spine Fusion. Dr. Joel Franck is a neurosurgeon with over 44 years of experience and specializes in a neck surgery known as “cervical fusion” and has developed a highly effective innovative method of C1-C2 fusion. This operation involves opening my previous surgical site, and placing screws and rods to connect the vertebrae in my neck and making it imobile, preventing further wear and tear, as well as stabilizing my neck.
This next step of surgery is crucial to my healing, and to letting me have a normal life again. I ran Cross Country for 6 years prior to falling sick, and I haven’t laced up my tennis-shoes since October because I can’t even walk up my stairs without gagging. I’m so unbelievably grateful and excited that Dr. Franck has accepted me as a patient, but having a surgeon in Florida comes with extreme challenges. I’ll need to travel to Florida with my Mom for surgery and stay there for a minimum of 3 weeks after surgery, not including the boarding time for testing before surgery. This involves:
• Out-of-state lodging for me and my Mom
• Ongoing physical therapy and rehab
• Post-op imaging and follow-up care
• Travel, food, and medical supplies
• Time away from work/extra schooling for my Mom and myself and basic living expenses
I’ve been fighting for so long to get better, even calling doctors offices and leaving class before school ended, to find a surgeon that would help me. I’ve got over 20 “no’s” from surgeon’s offices across the country before Dr. Franck was the magical “yes.” My Mom and I kept saying we just needed one, and we’ve finally got it, but it comes with a lot of expenses that my family hasn’t been able to account for. No one plans on getting sick, especially not after you’ve just PR’d in your 5K with a time of 21:51 a week before your life changes forever with brain and spine disease. I’ve been working so hard to push through being sick, to graduate high school, and to go to college, but at this point, I need some help. The financial weight of falling sick is catching up to the emotional and physical load of fighting to live every day. That’s why I’m, on bended knee, asking for help. Any donation -big or small- will go directly toward my surgery and recovery costs. If you’re unable to give, sharing this with others, through messages, social media, or even word of mouth, would mean the world to me.
I’ve been spending every free moment of every day trying to secure my health and future, and I’m so grateful for the love and support that has carried me this far. Thank you for being part of my journey, if you’d like to follow along you can follow me at Leighpulis_ on instagram for video updates. Ever grateful,
Madison Pulis
