Welcome to our CaringBridge site. It has been created to keep friends and family updated about Laura's journey with Chiari, Ehlers Danlos Syndrome, Dysautonomia, open head wounds, Spinal Instability,many heart issues, stroke, sepsis/MRSA/infections, Addison's Disease, tethered spinal cord, along with a craniocervical fusion & pacemaker - just to name a few. My Story is the introduction to our CaringBridge site. Be sure to read the latest in the journal, view the photo gallery, and drop us a line in the guestbook to help bring a smile and support. For Laura's "Only One Percent" experiences, go to www.OnlyOnePercent.wordpress.com
I'm Laura, a 26 year old fighting for a life without pain and sickness, from WA. At one point I was undergrad at the University of Washington in Seattle on my journey to live my dream and passion to become a pediatric neurosurgeon, however have been on medical leave for years. My goal is to get back there. I've undergone over 30 surgeries since I was 15, primarily neuro and cardiac.
In 2003 , I began passing and my heart would go into asysytole (stopping for a few seconds), so in June 2004 I had a pacemaker implanted at the age of 15. Less than a month later, my leads fell out and I had a 2nd heart surgery. After that, I started crashing. I spent the next year and a half in immense pain with extensive neurological problems to the point where I could not get out of bed or go to school. The worst part? None of the doctors a)believed me or b) could figure it out, so I was dismissed and deemed, essentially, crazy. The doctors told me to basically stop trying to find something wrong, but how could I stop fighting for my LIFE?? I found out about Chiari Malformation online and had over 80% of the symptoms, so we went to The Chiari Institute in NY where I was diagnosed with Chiari, Ehlers Danlos, and many of its sister disorders. I had the first of many neurosurgeries in Feb 06 and was subsequently diagnosed with Tethered Spinal Cord for which I had spinal surgery for in March 07. I've always known and said that I could wake up one morning and symptoms would be back and everything would change. I didn't realize how true that was until my freshman year at UW, when my past came back - a new spinal fracture. Less than one month post op, they found that I did have a stroke and that there was a hole in between the hearts chambers known as a PFO. Shortly after I learned my TCS had come back, I underwent heart surgery, via cath, to repair the PFO and had my second spinal cord redetethering at TCI. A few months later, I was diagnosed with another fracture/kyphosis and underwent major neurosurgery to fix the break and extend my craniocervical fusion to T2 - this time in Seattle. Was doing great 6 months post op, til I was literally grabbed and shook on my way to class. Since then, I had to go back on medical leave and am pretty much couch bound. I've had a port placed for home IV treatments, a cardiac sinus node ablation, several surgeries/procedures, spontaneous spinal leaks, was diagnosed and began treatment for Addison's Disease and a huge neurosurgery in NY to fix cranial settling/cervical instability/kyphosis/fracture at T2/3 (which makes it so I litterally couldn't hold my head up on my own). TurB's out my old surgeon had taken out the bone connecting my skull to my spine! So in 8/2011 I was refused from the occiput to T4 - longest ever at TCI, 2nd all over! Since then I developed a radiation buRN and hardware infection which caused me tI be airlifted to NY to have 5 surgeries And 4 months in the hospital because my head was literally split open. It then reopened and the infection came back simmering, 9 months ago(which failed to heal nonsurgically and with hyperbarics) so it will require two big surgeries to try fiz as a last resort. i was also recently diagnosed w Hypothalmic Ammenorhea which ill soon start treatment for. I'm exhausted but so ready to have surgery and move forward with my life! To date (May 2015) am working with surgeons to still close my open head and fighting off lots of infections and a scary septic experience earlier in the year which led to my pacer/port (and heart and blood) being infected so the pacer/leads and port were removed. Consequently, am now dealing with the cardiac episodes I was dealing with at the age of 15 that the pacer had fixed but Are back, so working with my cardiologist re putting a new one in.
I'm a big advocate for Chiari malformation, especially kids and families dealing with it and its sister disorders, and have raised awareness for this rare brain malformation and funds for research. I organized and held a Fun Run in March 07 which raised over $11,000 for research at The Chiari Institute and in May 2008 recieved non profit status for my new organization Hope for Chiari which has so far raised over $4,000. The goal of HFC is to support those with Chiari and their families through outreach programs such as carepackages and advice/information on everything from symptoms to how to cope as a family and to raise funds and awareness for Chiari. I also worked with the writers/producers of the Fox TV show "House" on a Chiari episode that aired in May 2010 and was lucky enough to get to go on set! Email me if you would like to help with Hope For Chiari.
Major Diagnosis': neurocardiogenic syncope, chronic tachycardia, autonmic dysfunction (affects my heart and autonomic nervous system), PFO, Chiari Malformation I, Ehlers Danlos Syndrome,, Tethered Cord, Cranialcervical instability, spinal instability, stroke, severe kyphosis, Addison's Disease, radiation burn, spontaneous CSF leaks, hardware infection, Hypothalmic Ammenhorea, MRSA/staph/sepsis, open head wound
I vaguely mentioned in my last entry that they MIGHT take me back into the OR. Well, it's definitely happening and this third in this series of surgeries over the past two weeks is going to be TODAY around noon. So please pray for myself, my surgeons, mom and my pain management team. Plan is for them to take me into the OR around noon. Basically this is two surgeries in one!
Since it's midnight I'll keep it short. There are two areas that need fixing: the open wound on the side of my Neck and the hole at the bottom of my flap. They're going to do the same thing to both. Cut out the affected area and then do a fat and split thickness graft from my thigh and will transplant it over to these two openings. They put out on TWO wound vacs (with the positioning it's hard to get them to stay sealed) and another drain and I'll be in the hospital at least another week, which we are getting super homesick and such. Also I'm praying we have a better pain management plan this time and that they adhere to sajd plan.
Please pray I come out of this without ANY open wounds or holes in my body. And please pray for my mom and I because bith of us are having a hard time with already needing a third surgery though we are grateful To do it now as apprised to waiting, but still it's hard and it'd be nice if once things went easily, according to plan and without complications. I'm nervous because of "what ifs", #1 being what if this doesn't work, as I am so so exhausted..
The good reminder that comes out of this is how incredibly blessed I am to have all of you, my incredible family, friends and supporters right there behind me to catch me if I fall, to laugh when I need to and be with me if I need fk cry or just sit on the couch silently and watch tv together so I don't feel alone. And I have THE BEST girlfriends in the world - they made the 4 hour round trip trek last weekend here just to see me, so I'm so lucky and grateful in that regard. And thanks to each of you for reading these things and caring and for those who have called, wrote notes, send cards, etc. - THANK YOU, this helps and means more than you could ever imagine. I had my mom put up tons of my fav pics from places I have been, the people I love and things that make me smile (aka a ridiculous amount of pics of my cat, Marshawn ;) lol). As a visual reminder of That love and support and the things I move to do as inspiration (I'll put a pic of the wall on here).