Lexa’s Spinal Surgery—Sept 7—Help make it happen!
Donation protected
Hello everyone!
I need to raise $4706.68 for my upcoming occult tethered cord release surgery on September 7. According to the finance office at Medical University of South Carolina (MUSC), I must pay no later than September 4 in order for surgery to move forward.
I know this is a huge ask—a lot of money in a short amount of time. Although it is a lot, I have faith that the disabled and chronically ill community, along with anyone else who cares about the state of healthcare and the ways that patients are being neglected right now, can help me meet this urgent goal.
Without our community I would have nothing. The disabled people I have met along the way have kept me going in more ways than one. From my very sick friend letting me stay in her house right now while I need housing, to the pieces of useful information we share with eachother online, to the genuine love I feel from each of us that I have the privilege of calling a friend. Without y’all I would have no friends, no options, no hope—the isolating reality that many sick people know all too well, through no fault of our own.
Few communities fight for and support eachother the way ours does. Many of us that have had no choice but to crowdfund know what it’s like to feel apprehensive after making a GoFundMe, for it to sit there for days without any shares, and the sense of relief and love that passes over us when someone—often another sick person—gives that first share, or that first modest donation. We have a shared struggle and despite our differences, each of us knows what it’s like to need concrete support in a world that is constantly telling us “no” in various ways (or worse yet: giving us no answers at all). We fight every day against the discrimination that comes with having a disability.
Our physical suffering, and all that comes with that, causes us to see the world for what it really is, and gives us the gift of compassion. People who aren’t disabled also know what it’s like to suffer in other ways, to need support—the experience of being sick has caused me to cross paths with some compassionate people out in this world. I get emotional just thinking about it.
WHY SURGERY?
Insurance just approved coverage of my surgery a few days ago. (Often, insurance denies coverage for tethered cord release surgery and the surgery date is pushed back while an appeal ensues— luckily this has not been the case.) The $4706.68 is the portion that I am responsible for paying WITH insurance’s coverage.
My Ehlers-Danlos Syndrome (EDS) is very progressed at age 27—both spinally and in the rest of my body. If I could put the surgery off any longer, I absolutely would. Because of my occult tethered cord syndrome I have two symptoms that make it undoable to put it off any longer:
1- I have a permanent migraine which has persisted for over a year now. Because of this I have a lot of trouble reading and writing, my memory is rapidly declining, etc. For those who do not struggle with neurological symptoms, this can be hard to conceive. I try to explain it like this: imagine the way your head feels when you have a bad hangover. Now imagine your head feels like that Every. Single. Day. The idea behind getting the tethered cord release surgery is to stop my spinal cord from being tugged down, hence relieving some of the pressure on my brain. We also hope this will lessen the impact of my spinal instability; when my vertebra slip out it exacerbates the tethered cord and permanent migraine.
2- BLADDER ISSUES: For about two years now, I have had severe neurogenic bladder symptoms which cause me to have to use the bathroom between 40 and 60 times daily, sometimes a bit less than that but sometimes more. This alone makes it impossible to hold a job aside from everything else such as my unrelenting back pain, etc.
I have carefully weighed the pros and cons, and I am taking many other approaches outside of surgery to lessen my symptoms, but to give me the best shot possible for symptom improvement, I need to go through with this surgery now to avoid more permanent damage to my bladder-brain connection and hopefully give me my cognition back. I want to be financially independent as soon as possible—there is so much I want to do—and symptom improvement is a huge prerequisite to that.
I treasure each and every person who shared and donated their hard-earned money to the last fundraiser. That fundraiser was for the July 1 trip to this same neurosurgeon. During that appointment we scheduled this surgery. I have been extremely sick since then and have been dealing with an unstable financial and living situation, as many of us are.
I know it’s inconvenient to take the time to donate one dollar but if 4,707 people can donate one dollar each I will be off to surgery. If you cannot donate one dollar but want to support then please help me get this fundraiser in front of those 4,707 people by sharing. The logistics are set up for the most part, the flight is set up through Angel Flight; all that’s missing now is the payment. The process of writing this took days and my head is hurting really badly now.
(Pictured: Very top left- MUSC building when I was there July 1. Below that, myself and Rusty, one of the pilots who flew me to said July 1 appointment. Below that, the black x-ray of my neck taken back in 2017, as are the other two x-rays in the collage–note that my spine has degenerated since those were taken. Blue KT tape to hold my subluxing ribs in place under pilot pic. Remaining top row: My sister and I in March 2021, and my ER visit in August 2021 when my jaw subluxations started. Remaining bottom row: collage of medical receipts for funds raised during my first GFM, and a picture of me years ago after I first injured my ribs. Above that, Aimovig injection for permanent migraine. DIAGRAMS: the large one on the far right shows the portion of the spine my neurosurgeon will be operating on. The small diagram in middle shows three different stages of craniocervical instability, which is common in EDS patients and which my neurosurgeon has diagnosed me with).
I need to raise $4706.68 for my upcoming occult tethered cord release surgery on September 7. According to the finance office at Medical University of South Carolina (MUSC), I must pay no later than September 4 in order for surgery to move forward.
I know this is a huge ask—a lot of money in a short amount of time. Although it is a lot, I have faith that the disabled and chronically ill community, along with anyone else who cares about the state of healthcare and the ways that patients are being neglected right now, can help me meet this urgent goal.
Without our community I would have nothing. The disabled people I have met along the way have kept me going in more ways than one. From my very sick friend letting me stay in her house right now while I need housing, to the pieces of useful information we share with eachother online, to the genuine love I feel from each of us that I have the privilege of calling a friend. Without y’all I would have no friends, no options, no hope—the isolating reality that many sick people know all too well, through no fault of our own.
Few communities fight for and support eachother the way ours does. Many of us that have had no choice but to crowdfund know what it’s like to feel apprehensive after making a GoFundMe, for it to sit there for days without any shares, and the sense of relief and love that passes over us when someone—often another sick person—gives that first share, or that first modest donation. We have a shared struggle and despite our differences, each of us knows what it’s like to need concrete support in a world that is constantly telling us “no” in various ways (or worse yet: giving us no answers at all). We fight every day against the discrimination that comes with having a disability.
Our physical suffering, and all that comes with that, causes us to see the world for what it really is, and gives us the gift of compassion. People who aren’t disabled also know what it’s like to suffer in other ways, to need support—the experience of being sick has caused me to cross paths with some compassionate people out in this world. I get emotional just thinking about it.
WHY SURGERY?
Insurance just approved coverage of my surgery a few days ago. (Often, insurance denies coverage for tethered cord release surgery and the surgery date is pushed back while an appeal ensues— luckily this has not been the case.) The $4706.68 is the portion that I am responsible for paying WITH insurance’s coverage.
My Ehlers-Danlos Syndrome (EDS) is very progressed at age 27—both spinally and in the rest of my body. If I could put the surgery off any longer, I absolutely would. Because of my occult tethered cord syndrome I have two symptoms that make it undoable to put it off any longer:
1- I have a permanent migraine which has persisted for over a year now. Because of this I have a lot of trouble reading and writing, my memory is rapidly declining, etc. For those who do not struggle with neurological symptoms, this can be hard to conceive. I try to explain it like this: imagine the way your head feels when you have a bad hangover. Now imagine your head feels like that Every. Single. Day. The idea behind getting the tethered cord release surgery is to stop my spinal cord from being tugged down, hence relieving some of the pressure on my brain. We also hope this will lessen the impact of my spinal instability; when my vertebra slip out it exacerbates the tethered cord and permanent migraine.
2- BLADDER ISSUES: For about two years now, I have had severe neurogenic bladder symptoms which cause me to have to use the bathroom between 40 and 60 times daily, sometimes a bit less than that but sometimes more. This alone makes it impossible to hold a job aside from everything else such as my unrelenting back pain, etc.
I have carefully weighed the pros and cons, and I am taking many other approaches outside of surgery to lessen my symptoms, but to give me the best shot possible for symptom improvement, I need to go through with this surgery now to avoid more permanent damage to my bladder-brain connection and hopefully give me my cognition back. I want to be financially independent as soon as possible—there is so much I want to do—and symptom improvement is a huge prerequisite to that.
I treasure each and every person who shared and donated their hard-earned money to the last fundraiser. That fundraiser was for the July 1 trip to this same neurosurgeon. During that appointment we scheduled this surgery. I have been extremely sick since then and have been dealing with an unstable financial and living situation, as many of us are.
I know it’s inconvenient to take the time to donate one dollar but if 4,707 people can donate one dollar each I will be off to surgery. If you cannot donate one dollar but want to support then please help me get this fundraiser in front of those 4,707 people by sharing. The logistics are set up for the most part, the flight is set up through Angel Flight; all that’s missing now is the payment. The process of writing this took days and my head is hurting really badly now.
(Pictured: Very top left- MUSC building when I was there July 1. Below that, myself and Rusty, one of the pilots who flew me to said July 1 appointment. Below that, the black x-ray of my neck taken back in 2017, as are the other two x-rays in the collage–note that my spine has degenerated since those were taken. Blue KT tape to hold my subluxing ribs in place under pilot pic. Remaining top row: My sister and I in March 2021, and my ER visit in August 2021 when my jaw subluxations started. Remaining bottom row: collage of medical receipts for funds raised during my first GFM, and a picture of me years ago after I first injured my ribs. Above that, Aimovig injection for permanent migraine. DIAGRAMS: the large one on the far right shows the portion of the spine my neurosurgeon will be operating on. The small diagram in middle shows three different stages of craniocervical instability, which is common in EDS patients and which my neurosurgeon has diagnosed me with).
Organizer
Lexa Rice
Organizer
Mount Holly, NC
