Angela Young @ Cedars-Sinai CSF Leak Program
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Background Story
Hello, and welcome to our fundraiser. My name is Angela Young. I'm 49 years old, married to my best friend Lane, and have two awesome kids: Andrea (17) and Lucas (13). As many of you know, I have had chronic migraines, occipital neuralgia, atypical trigeminal neuralgia, stenosis of the cervical and thoracic spine, and a number of other issues in my head and neck for over 30 years. It started out slowly with a headache here and there and gradually added on new areas of pain, increased severity and frequency, to the point where the pain has been severe and constant for about the past 25 years.
Over the years I've seen 38 specialists, had multiple surgeries and dozens of procedures, tried more than 100 different medications, and many other therapies, such as ketamine infusions, physical therapy, chiropractic, acupuncture, etc. This year alone, I have already had 133 medical appointments, diagnostics, and procedures. To date all of the treatments either only worked for a very short time, not at all, or had too many side-effects.
Impact on My Family and Me
I had to stop working in 2000 due to the migraines, facial and neck pain. I gave up driving around 2009, because it is difficult to concentrate and I never know how much range of motion I will have in my neck. I usually only leave the house for doctor's appointments or one of my kids' important events. Being upright really increases my pain, plus noise, lights, strong smells, etc. increase migraine symptoms. Lane has had to take over all the cooking, cleaning, shopping, etc. (with help from the kids) in addition to his full-time job. We rarely get to do things or go places as a family. The kids frequently talk about feeling jealous and sad when other kids talk about outings and vacations with both of their parents. I do my best to come up with alternative activities, such as reading with them in the evenings before bed.
New Findings
I started seeing my current Neurologist, who is a certified Headache Specialist, at the beginning of this year. She suspects that I have had a chronic cerebrospinal fluid (CSF) leak somewhere along my spine or in my cranium. CSF leaks, especially chronic leaks that have gone untreated for many years, can be difficult to diagnose and treat. There are only two CSF Leak Programs in the United States, and they see patients from all over the world.
After reviewing my medical records and imaging (MRIs, CT scans, etc.), Dr. Schievink, a Neurosurgeon and Director of the CSF Leak Program at Cedars-Sinai Medical Center in Los Angeles, CA, agrees with my Neurologist that I likely have a chronic CSF Leak. Lane and I will be in L.A. the entire week of December 16th for the series of appointments to locate and seal the leak(s), including:
Tuesday: An MRI with and without contrast of my brain, and MRIs with Myelogram of my cervical, thoracic, and lumbar spine. This will take 2-1/2 hours, followed by an appointment to discuss my case with Dr. Schievink.
Wednesday: An IR Myelogram of my spine with digital subtraction, followed by a CT scan of my spine post Myelogram.
Thursday: A second IR Myelogram of my spine with digital subtraction.
Friday: A fibrin glue injection and/or blood patch to seal the leak(s).
Saturday: I will most likely need to spend a minimum of 24 hours lying with my head slightly elevated while the leak(s) seal.
A myelogram is a diagnostic imaging test which uses a contrast dye and X-rays or computed tomography (CT) to look for problems in the spinal canal. You can read about Digital Subtraction Myelography here. If you have more questions about CSF leaks, check out the Spinal CSF Leak Foundation.
What We Need Help With
The good news is that I have met my out-of-pocket maximum for the year with our health insurance, which means that they should cover the entire $20k+ cost of the treatment. I will keep you updated on the status of that.
As many of you know, however, Lane lost his job back in June and is still on the hunt for a new job, and I am unable to work due to my health, so we need help covering airfare, hotel, meals, local transportation, etc. We have had a family member helping us pay for the insurance premiums since Lane lost his job. If we could remove that burden from her for the month of December, that would be amazing. We are currently estimating $5,000:
$1,200 for two round trip plane tickets from Austin to L.A.
$1,000 for five nights in a hotel near the medical center
$200 for six days of transportation
$360 for six days of meals
$2,000 for insurance premiums for the month of December
We are very hopeful that this treatment will finally be what restores my quality of life. If you feel you are able to help us in any way, or could share our story with others, we would be so grateful. We are already so blessed by the help and support our community has shown us by driving me to doctors appointments, providing occasional meals so Lane doesn't have to cook every single night, and the many notes of encouragement and daily prayers for our family. Thank you, and please continue to keep us in your prayers.
Hello, and welcome to our fundraiser. My name is Angela Young. I'm 49 years old, married to my best friend Lane, and have two awesome kids: Andrea (17) and Lucas (13). As many of you know, I have had chronic migraines, occipital neuralgia, atypical trigeminal neuralgia, stenosis of the cervical and thoracic spine, and a number of other issues in my head and neck for over 30 years. It started out slowly with a headache here and there and gradually added on new areas of pain, increased severity and frequency, to the point where the pain has been severe and constant for about the past 25 years.
Over the years I've seen 38 specialists, had multiple surgeries and dozens of procedures, tried more than 100 different medications, and many other therapies, such as ketamine infusions, physical therapy, chiropractic, acupuncture, etc. This year alone, I have already had 133 medical appointments, diagnostics, and procedures. To date all of the treatments either only worked for a very short time, not at all, or had too many side-effects.
Impact on My Family and Me
I had to stop working in 2000 due to the migraines, facial and neck pain. I gave up driving around 2009, because it is difficult to concentrate and I never know how much range of motion I will have in my neck. I usually only leave the house for doctor's appointments or one of my kids' important events. Being upright really increases my pain, plus noise, lights, strong smells, etc. increase migraine symptoms. Lane has had to take over all the cooking, cleaning, shopping, etc. (with help from the kids) in addition to his full-time job. We rarely get to do things or go places as a family. The kids frequently talk about feeling jealous and sad when other kids talk about outings and vacations with both of their parents. I do my best to come up with alternative activities, such as reading with them in the evenings before bed.
New Findings
I started seeing my current Neurologist, who is a certified Headache Specialist, at the beginning of this year. She suspects that I have had a chronic cerebrospinal fluid (CSF) leak somewhere along my spine or in my cranium. CSF leaks, especially chronic leaks that have gone untreated for many years, can be difficult to diagnose and treat. There are only two CSF Leak Programs in the United States, and they see patients from all over the world.
After reviewing my medical records and imaging (MRIs, CT scans, etc.), Dr. Schievink, a Neurosurgeon and Director of the CSF Leak Program at Cedars-Sinai Medical Center in Los Angeles, CA, agrees with my Neurologist that I likely have a chronic CSF Leak. Lane and I will be in L.A. the entire week of December 16th for the series of appointments to locate and seal the leak(s), including:
Tuesday: An MRI with and without contrast of my brain, and MRIs with Myelogram of my cervical, thoracic, and lumbar spine. This will take 2-1/2 hours, followed by an appointment to discuss my case with Dr. Schievink.
Wednesday: An IR Myelogram of my spine with digital subtraction, followed by a CT scan of my spine post Myelogram.
Thursday: A second IR Myelogram of my spine with digital subtraction.
Friday: A fibrin glue injection and/or blood patch to seal the leak(s).
Saturday: I will most likely need to spend a minimum of 24 hours lying with my head slightly elevated while the leak(s) seal.
A myelogram is a diagnostic imaging test which uses a contrast dye and X-rays or computed tomography (CT) to look for problems in the spinal canal. You can read about Digital Subtraction Myelography here. If you have more questions about CSF leaks, check out the Spinal CSF Leak Foundation.
What We Need Help With
The good news is that I have met my out-of-pocket maximum for the year with our health insurance, which means that they should cover the entire $20k+ cost of the treatment. I will keep you updated on the status of that.
As many of you know, however, Lane lost his job back in June and is still on the hunt for a new job, and I am unable to work due to my health, so we need help covering airfare, hotel, meals, local transportation, etc. We have had a family member helping us pay for the insurance premiums since Lane lost his job. If we could remove that burden from her for the month of December, that would be amazing. We are currently estimating $5,000:
$1,200 for two round trip plane tickets from Austin to L.A.
$1,000 for five nights in a hotel near the medical center
$200 for six days of transportation
$360 for six days of meals
$2,000 for insurance premiums for the month of December
We are very hopeful that this treatment will finally be what restores my quality of life. If you feel you are able to help us in any way, or could share our story with others, we would be so grateful. We are already so blessed by the help and support our community has shown us by driving me to doctors appointments, providing occasional meals so Lane doesn't have to cook every single night, and the many notes of encouragement and daily prayers for our family. Thank you, and please continue to keep us in your prayers.
Organizer
Angela Holt Young
Organizer
Austin, TX