In August of 2018 Lacey had three vertebral artery dissections triggering hemiplegic migraines and occipital nerve damage. At the time doctors at TMH advised Lacey to seek a diagnosis of Vascular Ehlers-Danlos Symdrome, a fatal connective tissue disorder that required genetic testing to diagnose.

This was the first time Lacey reached out for your help, and she was able to get the genetic testing. The GREAT news is that with your help Lacey was able to rule out this fatal connective tissue disorder. She does not have Vascular Ehlers-Danlos Syndrome, but is continuing to seek treatment for severe hemiplegic migraines, seizures, and nerve pain (occipital neuralgia). The hemiplegic migraines can mimic the symptoms of a stroke, brain tumor, multiple sclerosis, epilepsy and even cause temporary paralysis or induce a coma. Lacey has experienced all of these symptoms, and it has been a terrifying journey to figure out what's actually happening.

In other good news, Lacey has gotten health insurance since her first hospitalization! This is especially fortunate since she has been in the ER nearly twenty times since the initial vertebral dissection to manage these symptoms. Her neurosurgeon has stressed the importance of her immediately seeking emergency care because any of these symptoms could indicate another potentially fatal vertebral artery dissection.

Lacey has also been able to transition into a more flexible, part time job that allows her to take time off for medical care as needed. This is especially important since all of her medical care is taking place at Mayo Clinic in Jacksonville, Florida because her condition is very rare, and Mayo is the only place nearby where the specialists and primary care physician with the kind of experience she needs practice.

Lacey has exhausted all of the treatment options that are covered by her insurance. However, there are several procedures and treatments that have the potential to dramatically increase Lacey's quality of life that are not covered by insurance, and she will most likely need to pay for these out of pocket before she is able to qualify for medical disability. Three options that Lacey's doctors are strongly urging her to pursue include nerve block injections (to treat occipital neuralgia), botox injections (for neck pain and as a preventative treatment for migraines), and medical marijuana (for seizures, hemiplegic migraines, pain management, and insomnia). The medications that Lacey has been on to treat various symptoms have had terrible side effects including gastrointestinal bleeding, insomnia, decrease in appetite, nausea, vomiting, more migraines, and fatigue. It is possible that some of the medications meant to treat the hemiplegic migraines are actually causing side effects that increase the frequency of these migraines. Many of these medications are habit-forming, and Lacey has also experienced severe adverse symptoms when changing medications.

Cost Breakdown: Anything you can contribute will be used to alleviate the following costs.
Nerve block: $850-$1100
Radiofrequency ablasion: $2100-$2800 (This is a more permanent treatment option if the nerve block injections prove helpful.)
Botox injections: $300-$600 every three months
Medical marijuana: at least $200 a month
Medical debt: over $20,000 (incurred over the past year)
Car repair (necessary for travel to and from Mayo): $1500

In addition to pursuing a long term treatment plan that would allow Lacey to work full time, she is also facing the possibility of needing to be on medical disability. Lacey has not been able to work full time for a year, and she has had to withdraw from her college courses. In the past two months Lacey has only been able to work an average of ten hours a week. Medical disability is not her first choice, but she is preparing for the possibility of its necessity by beginning to document the time she has had to take off work and consulting with a doctor to determine her eligibility. Most people with hemiplegic migraines do end up on medical disability even with aggressive treatment, but Lacey plans to exhaust all of her options before filing for medical disability. Any consultation about this is welcome.

Here are links to Lacey's current diagnoses for anymore information. https://americanmigrainefoundation.org/resource-library/hemiplegic-migraine/ https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Occipital-Neuralgia https://en.wikipedia.org/wiki/Vertebral_artery_dissection