Help Fund Carina's Neurosurgery
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Hi, my name is Carina and I'm 21 years old. As many of you know, long story short, I have multiple chronic illnesses and disabilities and you've probably helped me fund for treatments, surgeries, and medicines in the past, as many of them are not covered by insurance and I am unable to work and I rely on my family to support me. Thank you, I'm so grateful.
This past year has been very rough and I have dramatically declined in health to the point that I am currently bed bound and I only leave the house for necessary doctors' appointments. Last summer, I was suffering from my endometriosis; after that surgery I thought I was in the clear for awhile, but life had a different plan in store. . .
This year I was diagnosed with Craniocervical Instability (CCI), Tethered Spinal Cord, and Neurogenic Bladder. I am going to need a spinal fusion from (C0 to C2) and a tethered cord release to try to alleviate my symptoms. Most of the time people assume I've been in some kind of accident when they see me out in public because of my neck brace and wheelchair, but the truth is my own body did this to itself! The ligaments and connective tissues that support my skull and spine are deteriorating due to my Ehlers Danlos Syndrome (EDS). This basically means that my brain is sinking into my spinal column and if I don't have specialty neurosurgery soon, I'm a high risk for paralysis, blindness, permanent loss of bladder function, kidney failure, etc. The dilemma is, the only qualified surgeon is in NY, and I would have to pay for the operations myself, as they are not covered by my insurance.
Now here's the long story, if you care to read:
On a daily basis, since last December I began to notice an increase of back and neck pain, ocular migraines, tremors, brain fog, and blurry vision. I was taking online classes and I had to withdraw because I could not read anymore due to my vision, I struggled to type due to pain and tremors, and I fell behind due to short term memory loss and cognitive impairment. It took me and my dysautonomia specialist a couple months to connect the symptoms and realize that the culprit was neurological. I started wearing a cervical collar and my symptoms improved. This confirmed that the issue must be a structural issue with my cervical spine. I had 5 hours worth of brain and spine MRIs in January and we sent them off to a world renowned neurosurgeon in New York to be evaluated for CCI, Chiari malformation, CSF leak, and Tethered spinal Cord; as he one of the doctors in the world that specializes in correcting spinal commorbidities in patients with EDS. If you're curious, there's only 3 here in America, all on the East Coast!
Fast forward to March and things began to worsen further. I was in the Emergency room for a week suffering from uncontrollable full-body convulsions. I saw 5+ neurologists and they all stared at me in disbelief and awe; they had never seen anything like that before, it looked like a seizure, but I was alert and conscious during the episodes. At this point I was still waiting on my consult with the neurosurgeon in NY. Local doctors either stared at me and had no idea how to help, or diagnosed me with psychological conditions and said that the convulsions were all in my head and I could control it by going to behavioral therapy! Mind you, at this point I could not walk or stand at all, any movement or touch triggered full-body convulsions, I could no longer empty my bladder or use the bathroom on my own, and this all seemed to happen spontaneously. As you could imagine, my family and I were scared; we didn't know if or when I'd be able to walk again, if the convulsions would stop, or if my vision would restore during episodes that caused temporary blindness and no doctors here believed me, let alone treated me!
I was released from the hospital without any answers and my parents had to be my caregivers and quickly make our house accessible for me. I had to buy an adjustable bed because lying flat triggers my convulsions, causes intense head pressure, and makes me go blind. I have to use a wheelchair to get around, and I need help with EVERYTHING now, even the simplest of tasks like getting out of bed, bathing, cooking meals, and combing my hair.
Finally, at the end of March I had a video consult with the neurosurgeon and based on my MRIs and symptoms he diagnosed me with Craniocervical Instability and tethered spinal cord and explained that the CCI leads to intercranial pressure and compression of the brainstem which causes the brain fog, vision loss, memory loss, convulsions, dystonia, speech difficulties, intractable migraines, sensory processing issues, poor coordination, and may very well be the cause of my POTS and dysautonomia!
Currently, cervical traction (as seen above in the pic; the device uses a pulley system to lift my head from my neck) and my cervical collar provide temporary relief for my CCI but the real treatment is a Cervical Fusion (which means metal rods will be installed into my skull and vertebrae to support my neck and head). Notice I said treatment; there is no cure for this condition and I may need more surgeries in the future, but this surgery will improve my quality of life dramatically. Although it may seem inconvenient and expensive to travel all the way to New York, I wouldn't trust anyone else to do the procedure since I'm such a complicated case and the fusion is irreversible.
After the fusion, I have to recover for at least 2 months and then have my second operation, the tethered spinal cord release. Tethered cord syndrome (TCS) is a condition that can be present in EDS, where the spinal cord is attached to surrounding tissue in a way that creates elongation and tension of the nervous tissue, leading to low back pain, loss of bladder control, lower body weakness, loss of sensation, inability to walk or stand, convulsions, poor balance and gait. TCS is treated with surgery that removes material causing tension, but there is no cure or guarantee that your spinal cord won't re-tether in the future and after surgery I may need months of rehab to be able to walk again.
It's been extremely stressful trying to manage my severe pain and debilitating symptoms while completing the necessary pre-op work-ups for these surgeries. We haven't really had time to figure out the logistics and I try not to worry myself. I have no idea how I'm going to afford the operations, as I will have to pay out of pocket for everything since the operations will be out-of-state, so they are out of network. I will also have to pay for travel costs for myself and my caregivers, as well as the hospital bills for my stays. It seems financially unrealistic and impossible, but when you're suffering you can't have that negative mindset. I know there are people who care about me and I have a family that will do whatever it takes to get me the life-saving treatment I need, no matter the cost. These surgeries are by no means cures, but they will give me my quality of life back. I have never experienced such pain and although it may seem invasive or scary, I know that this is my only option for relief at this point. Furthermore, it is actually more dangerous for me to postpone the operations due to the risk of irreversible nerve damage, paralysis, blindness, kidney failure, etc.
I look forward to the future; it will be a long road to recovery, but the thought of being able to walk again, leave my house, go to concerts, spend time with family and friends, and re-enroll in school is what keeps me going. I may be stuck in this dark bedroom right now but there is light at the end of the tunnel; with your support I have the potential to regain my strength and independence. I hope that I can overcome this obstacle, raise awareness, and inspire others who suffer from EDS and its horrible comorbidities.
Thank you for listening to my story and I appreciate all your support, donations, and prayers.
Other ways to help:
I am in need of a wheelchair ramp to make my house accessible, I need massages to help manage my pain and dystonia, and I also need a walker with a seat, if you have one you'd like to sell or donate to me please contact me! Or if you have any airline miles or connections/discounts you'd like to gift me, I'd appreciate it. Also, if you have other fundraising ideas I'm open to it, but I obviously can't be involved in planning or working on it.
Thanks again,
Carina
Hi, my name is Carina and I'm 21 years old. As many of you know, long story short, I have multiple chronic illnesses and disabilities and you've probably helped me fund for treatments, surgeries, and medicines in the past, as many of them are not covered by insurance and I am unable to work and I rely on my family to support me. Thank you, I'm so grateful.
This past year has been very rough and I have dramatically declined in health to the point that I am currently bed bound and I only leave the house for necessary doctors' appointments. Last summer, I was suffering from my endometriosis; after that surgery I thought I was in the clear for awhile, but life had a different plan in store. . .
This year I was diagnosed with Craniocervical Instability (CCI), Tethered Spinal Cord, and Neurogenic Bladder. I am going to need a spinal fusion from (C0 to C2) and a tethered cord release to try to alleviate my symptoms. Most of the time people assume I've been in some kind of accident when they see me out in public because of my neck brace and wheelchair, but the truth is my own body did this to itself! The ligaments and connective tissues that support my skull and spine are deteriorating due to my Ehlers Danlos Syndrome (EDS). This basically means that my brain is sinking into my spinal column and if I don't have specialty neurosurgery soon, I'm a high risk for paralysis, blindness, permanent loss of bladder function, kidney failure, etc. The dilemma is, the only qualified surgeon is in NY, and I would have to pay for the operations myself, as they are not covered by my insurance.
Now here's the long story, if you care to read:
On a daily basis, since last December I began to notice an increase of back and neck pain, ocular migraines, tremors, brain fog, and blurry vision. I was taking online classes and I had to withdraw because I could not read anymore due to my vision, I struggled to type due to pain and tremors, and I fell behind due to short term memory loss and cognitive impairment. It took me and my dysautonomia specialist a couple months to connect the symptoms and realize that the culprit was neurological. I started wearing a cervical collar and my symptoms improved. This confirmed that the issue must be a structural issue with my cervical spine. I had 5 hours worth of brain and spine MRIs in January and we sent them off to a world renowned neurosurgeon in New York to be evaluated for CCI, Chiari malformation, CSF leak, and Tethered spinal Cord; as he one of the doctors in the world that specializes in correcting spinal commorbidities in patients with EDS. If you're curious, there's only 3 here in America, all on the East Coast!
Fast forward to March and things began to worsen further. I was in the Emergency room for a week suffering from uncontrollable full-body convulsions. I saw 5+ neurologists and they all stared at me in disbelief and awe; they had never seen anything like that before, it looked like a seizure, but I was alert and conscious during the episodes. At this point I was still waiting on my consult with the neurosurgeon in NY. Local doctors either stared at me and had no idea how to help, or diagnosed me with psychological conditions and said that the convulsions were all in my head and I could control it by going to behavioral therapy! Mind you, at this point I could not walk or stand at all, any movement or touch triggered full-body convulsions, I could no longer empty my bladder or use the bathroom on my own, and this all seemed to happen spontaneously. As you could imagine, my family and I were scared; we didn't know if or when I'd be able to walk again, if the convulsions would stop, or if my vision would restore during episodes that caused temporary blindness and no doctors here believed me, let alone treated me!
I was released from the hospital without any answers and my parents had to be my caregivers and quickly make our house accessible for me. I had to buy an adjustable bed because lying flat triggers my convulsions, causes intense head pressure, and makes me go blind. I have to use a wheelchair to get around, and I need help with EVERYTHING now, even the simplest of tasks like getting out of bed, bathing, cooking meals, and combing my hair.
Finally, at the end of March I had a video consult with the neurosurgeon and based on my MRIs and symptoms he diagnosed me with Craniocervical Instability and tethered spinal cord and explained that the CCI leads to intercranial pressure and compression of the brainstem which causes the brain fog, vision loss, memory loss, convulsions, dystonia, speech difficulties, intractable migraines, sensory processing issues, poor coordination, and may very well be the cause of my POTS and dysautonomia!
Currently, cervical traction (as seen above in the pic; the device uses a pulley system to lift my head from my neck) and my cervical collar provide temporary relief for my CCI but the real treatment is a Cervical Fusion (which means metal rods will be installed into my skull and vertebrae to support my neck and head). Notice I said treatment; there is no cure for this condition and I may need more surgeries in the future, but this surgery will improve my quality of life dramatically. Although it may seem inconvenient and expensive to travel all the way to New York, I wouldn't trust anyone else to do the procedure since I'm such a complicated case and the fusion is irreversible.
After the fusion, I have to recover for at least 2 months and then have my second operation, the tethered spinal cord release. Tethered cord syndrome (TCS) is a condition that can be present in EDS, where the spinal cord is attached to surrounding tissue in a way that creates elongation and tension of the nervous tissue, leading to low back pain, loss of bladder control, lower body weakness, loss of sensation, inability to walk or stand, convulsions, poor balance and gait. TCS is treated with surgery that removes material causing tension, but there is no cure or guarantee that your spinal cord won't re-tether in the future and after surgery I may need months of rehab to be able to walk again.
It's been extremely stressful trying to manage my severe pain and debilitating symptoms while completing the necessary pre-op work-ups for these surgeries. We haven't really had time to figure out the logistics and I try not to worry myself. I have no idea how I'm going to afford the operations, as I will have to pay out of pocket for everything since the operations will be out-of-state, so they are out of network. I will also have to pay for travel costs for myself and my caregivers, as well as the hospital bills for my stays. It seems financially unrealistic and impossible, but when you're suffering you can't have that negative mindset. I know there are people who care about me and I have a family that will do whatever it takes to get me the life-saving treatment I need, no matter the cost. These surgeries are by no means cures, but they will give me my quality of life back. I have never experienced such pain and although it may seem invasive or scary, I know that this is my only option for relief at this point. Furthermore, it is actually more dangerous for me to postpone the operations due to the risk of irreversible nerve damage, paralysis, blindness, kidney failure, etc.
I look forward to the future; it will be a long road to recovery, but the thought of being able to walk again, leave my house, go to concerts, spend time with family and friends, and re-enroll in school is what keeps me going. I may be stuck in this dark bedroom right now but there is light at the end of the tunnel; with your support I have the potential to regain my strength and independence. I hope that I can overcome this obstacle, raise awareness, and inspire others who suffer from EDS and its horrible comorbidities.
Thank you for listening to my story and I appreciate all your support, donations, and prayers.
Other ways to help:
I am in need of a wheelchair ramp to make my house accessible, I need massages to help manage my pain and dystonia, and I also need a walker with a seat, if you have one you'd like to sell or donate to me please contact me! Or if you have any airline miles or connections/discounts you'd like to gift me, I'd appreciate it. Also, if you have other fundraising ideas I'm open to it, but I obviously can't be involved in planning or working on it.
Thanks again,
Carina
Organizer
Carina Fuller
Organizer
Fairfield, CA
