Hi, my name is Megan Barrett. A bit over a year ago I was under the impression I was at my healthiest and in the best shape ever. I worked 55+ hours/week at my PT practice, stayed extremely active with my kids (now 5 and 8), did all those Mommy/Wifey things, loved getting outdoors for just about anything, was very into all things health and wellness, and did high intensity workouts 4+ times/wk.
Looking back, there were some clues things weren't as perfect as they seemed in regards to my health, but I always just swept it under the rug and kept moving.....until I couldn't. During the covid shutdown my body completely revolted mentally, physically, and cognitively. My healthcare providers were clueless as to what could be going on after MS was ruled out, so I put my medical research and differential diagnosis skills to work. I self-diagnosed a slew of disorders and went on to travel and see the docs who could help me (in Cincinnati, Indianapolis, and Charleston thus far). In the meantime, I ended up having to close my PT practice in December and have been mostly bed and house bound since. It has been a struggle in all sense of the word for myself as well as my family.
I am diagnosed with hypermobile ehlers danlos syndrome (hEDS), which is a genetic disorder. There are many signs/symptoms that go along with it that can all be life changing on their own, but EDS can also bring along with it many comorbidities. I also have postural orthostaic tachycardia syndrome (POTS), which was my first diagnosis years prior to getting so ill, as well as mast cell activation syndrome (MCAS), and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I will always have EDS, but it appears in my case, I have gotten so ill with these other disorders related to spinal issues I have as a result of EDS. I have been diagnosed with craniocervical instability (my head moves too much on my neck), which results in brainstem compression/stretching of my spinal cord, in addition to further cervical (neck) instability with cord compression, and a tethered cord that is stretching my cord from the bottom as well.
Many people who have these structural diagnoses can do better with PT and many have to have surgery(ies) in order to partially or fully recover. Unfortunately, I have failed PT (I couldn't even do it!), so I am taking the big leap to have surgery. There are only a handful of surgeons who deal with these issues, so my wonderfully talented surgeon, Dr. Sunil Patel, is in Charleston, SC. I will be having a tethered cord release on September 10th and will have to stay in Charleston for a wk thereafter. It should correct several of my issues that are directly connected to the tethered cord, and it may improve some of the symptoms from my craniocervical issues as well.....or it could make them worse, and I will then be having a fusion to stabilize my head and neck.
I hate to ask people for anything, especially money, but since we have been living off one income and paying for tons of medical expenses and related travel (plus my kids appear to have these things as well, so we are doing a lot of travel and medical appts for them, too), I am sucking it up and doing just that. I and my family would be eternally grateful of anything anyone can donate. We have taken a huge financial hit already, and this surgery and related travel/lodging is definitely the cherry on top. I appreciate all the support I have received throughout this journey and will be very thankful for any additional support or financial assistance we receive. ❤❤❤