Help Lauren Overcome Her Health Challenges
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Hi, I'm John Kreiner, and my adult daughter, Lauren, has been fighting an uphill health battle for many years, culminating in several surgeries and invasive testing procedures to diagnose better and treat her many ailments. We live in Maryland, and the specialists who treat these rare conditions are all out of state (Providence, RI, New York, NY, and Vienna, VA), leading to travel and lodging expenses.
Currently, Lauren has been diagnosed with the following:
- Postural Orthostatic Tachycardia Syndrome (POTS)
- Ehlers-Danlos Syndrome (EDS)
- Tethered cord syndrome (TCS)
- Eagle Syndrome, also known as Stylohyoid Syndrome
- Hashimoto's Disease
- Craniocervical Instability (CCI)
- MCAS, or Mast Cell Activation Syndrome
To date, she has had:
- Upright MRI
- Tethered Cord release surgery
- Many, many hours of physical and occupational therapy with a neurological specialist
- Invasive Cervical Traction (ICT)
- Intracranial Pressure (ICP) Bolt with Positional Testing
- Multiple MRI and CTs
- Nerve Conduction Testing
- And many more diagnostic tests and blood work
Upcoming, Lauren has at least four procedures in the next 3 months:
- CT Myelography with/without Dynamic Repositioning, to detect dural blebs, micro CSF leaks, and possible CSF to Venous Fistulae - April (this may result in an additional procedure in the future)
- Intracranial Pressure (ICP) Bolt with Positional Testing repeated - April
- Styloidectomy (Left side April, Right side June)
With the most severe presentation of symptoms occurring after a concussion in her mid-teens and then two accidents where the vehicle she was riding in or driving was rear-ended, Lauren ended up bedridden and unable to work starting in December of 2023 when the steep uphill battle got tough. After enduring years of being told there was nothing wrong or that she was experiencing growing pains, Lauren has finally, over the last year and a half, found the right specialists who have been able to diagnose her with these ailments. She has suffered both physically and mentally since her early teenage years, but we are getting close to her getting to as functional a life as possible, while she will always live with the chance that additional symptoms will present in future years. With the procedures completed to date, while she still spends most of her time bed-bound, she has been able to learn to walk again with the help of physical therapy and is getting stronger in preparation for the next procedures.
While we are not sure exactly how much all of this will end up costing us after insurance (some in-network and some out-of-network), we already have a huge amount of medical bills and travel and lodging that Lauren needs help paying. If you can find it in your heart, we would appreciate any support or sharing of this page you could provide. We will be forever grateful and feel blessed that we have at least gotten answers and have a path forward.
Co-organizers (3)
John Kreiner
Organizer
Bel Air, MD
Courtney DiEdoardo
Co-organizer
Lauren Kreiner
Co-organizer
Rachelle Kreiner
Co-organizer