In February 2014, I woke up one morning with a horrible migraine, which was nothing out of the ordinary. But when I got up to go to the bathroom to get some over the counter meds to help with my head I ended up running into the wall. My balance was off and I was struggling to walk straight. I went back to bed & tried to sleep it off but when I woke up, the same thing happened. I decided it was bad enough to go to the doctor who gave me a total of 5 different medicines, a script for a head CT and a referral to a local neurologist.
Over the course of 6 months, my symptoms began to increase in number and severity. I was having episodes where my heart would race, even when sitting in bed. I was getting dizzy and passing out multiple times per day. My migraines were not getting better, despite prescription migraine medications. I could not tolerate light or noise so my husband put up blackout curtains and we kept the door to my bedroom shut at all times. By the beginning of the November 2014, I had essentially become home-bound & almost entirely bedridden, aside from going to the many doctor's appointments I had. Neurologists (both locally and at Duke) as well as a neurosurgeon at Duke had read my CT and MRI as “normal”, but my symptoms continued to worsen. After doing intensive research, I came across a doctor just outside of NYC who had helped many people just like me, who had “normal” imaging & were desperate for help.
In the spring of 2015, we flew up to the Chiari Institute in Manhasset, NY to see one of the experts that dealt with my many issues. He diagnosed a congenital brain malformation called Chiari malformation. This means that I was born with the cerebellum (the part of the back of the brain) sags out of the skull and down into the spinal canal. This sagging pressed on the back of my brain stem, which is responsible for all of the things the body does without thinking about it (heart beating, blood circulation, breathing, sleeping, digestion, body temperature control, etc.) He explained that it is not uncommon for patients to be born with Chiari and not have symptoms until their 20's-30's like me, although many look back and are able to see symptoms in hindsight from their childhood, also like me.
In addition to Chiari, I was also diagnosed with a connective tissue disorder called Ehlers-Danlos Syndrome. Connective tissue can be thought of as the "glue" that holds the body together. I heard somebody explain connective tissue in terms of "super glue" vs. "scotch tape": Most people have a body that is put together with "super glue" so it is held together and is strong enough to live without major complications. A person with EDS, however, has a body that is put together with "scotch tape" and easily breaks down repeatedly. For me, one of the ways EDS has impacted my body is that the ligaments that hold my spine in alignment with my skull are too lax or stretchy. This means that the top of my spine would press in to the front of my brain stem, especially when I moved my head forward, backward and side to side. Essentially, my brain stem was being squeezed from the front and the back, which caused my dysautonomia & Postural Orthostatic Tachycardia Syndrome (POTS) symptoms: racing heart, the blood pooling in my legs and arms, passing out, the inability to cool my body/control temperature, digestion issues, sleep disturbances, etc.
There are no cures for Chiari Malformation, Ehlers-Danlos Syndrome or Dysautonomia/POTS, so they try to control symptoms as best they can. In order to alleviate some of the symptoms of Chiari & the craniocervical instability caused by EDS, I underwent a posterior fossa decompression and occipitocervical fusion surgery (they permanently fused the base of my skull to the top of my spin) in September of 2015 in NY. The day before I was supposed to be discharged, I developed a post-op infection in the surgical site along with a pseudomeningocele which extended my hospital stay by a week so they could administer 2 broad-spectrum IV antibiotics. The hardware was painful at the base of my skull well after the initial "healing" period. It also did not fuse correctly and was loose based upon the follow up imaging. I had horrible symptoms that even required me to undergo a lumbar puncture (spinal tap) to rule out the possibility of increased pressure in my brain. They also noted the pseudomeningocele was not shrinking. Less than a year after my 1st surgery, we went back up to NY for surgery to remove the failed hardware and to have my 2nd occipitocervical fusion in July of 2016.
Following this second surgery, my symptoms got somewhat better but the new type of hardware that was keeping my skull in line with my spine was incredibly painful. I could not rest my head in any direction for more than a few minutes at once. Following multiple additional CTs and MRIs and another lumbar puncture, my surgeon decided that he felt that my fusion had been successful enough where I could remove the upper hardware to relieve the pain. This 3rd surgery never took place because of miscommunication from his office and then this surgeon retired in December 2017.
In the beginning of 2018, I scheduled an appointment with the most renowned surgeon for Chiari malformation and craniocervical instability in the Ehlers-Danlos patient population in Maryland, outside of Washington DC. The 1st available appointment was in May, so on Mother's Day, my mom & I headed up to MD for the initial consultation. He read the same MRI that the surgeon in NY read and told me that it had *NOT* fused all the way. He said that I really needed to have the hardware replaced and done in a specific manner that would be best for patients with EDS. He also wanted me to have more imaging done to see if I needed additional levels of fusion done, which was done mid-August 2018. Surgery has been scheduled for my 3rd hardware revision and occipitocervical fusion surgery for mid-October, 2018. It is probable that this surgery will be a more extensive surgery than the previous two, but this should be finalized in the next 2 weeks, when I have the telephone consultation with the surgeon.
This specialist is considered out of network for all insurance companies, so he requires a 20% deposit which currently is $6,804 which is due by October 10th. (I say currently because this price could go up if he decides I need to be fused on lower levels.) We will also need to stay up there for 2 weeks following the surgery, so we will need to pay for lodging for 17-18 nights and food for the same length of time for 2 people (My husband will be with me for a week & then my mom will be up there for the rest of the time.)
Your help to make this surgery possible is not only desperately needed but also will be life changing, not only for me personally, but for my husband and my 3 kids as well! Thank you for being a part of my Crew!!!
DonationsSee top donations
- Grace Calabrese
- MJ Tropea
- Martha Cochran
- Laura and Jim Hill
Organizer and beneficiary
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more