My wife, Lisa, was diagnosed with a seizure disorder six months ago.
She went from being a very active 3rd year medical student on an Air Force scholarship to receiving a vague diagnosis, struggling with seizures daily and weekly, taking an extended leave of absence from medical school (ability to return is uncertain), losing her Air Force scholarship, and undergoing expensive treatment.
We have been blessed financially and will probably be ok, but this has thrown a wrench in things. We'll put 50% of what you give aside so we can help friends and family in need (who we are unable to help right now) and use the other 50% to recoup the unexpected medical expenses and treatment costs resulting from Lisa's seizure disorder.
The long version.
At 0415 on Thursday, 19 January 2017, Lisa and I were driving home after being discharged from an ER visit for the worst sore throat of Lisa's life. Lisa, lying in the reclined front passenger seat, said she felt really bad and wanted me to drive back to the hospital. Seconds later she started to moan, her breathing turned raspy and ragged, her eyes rolled around unresponsively, her pupils dilated and her body spasmed between upright and reclined positions in the car seat. As any good, panic-filled husband does, I called 911 after stopping my car in the middle of the street, randomly opening the passenger door as if that would help. Part-way through the call Lisa transitions from unconsciousness and weak breathing to a semi-conscious state, pitifully repeating "help me" over and over while I wait, helpless.
So began our journey with this seizure disorder.
Apart from being my beautiful, loving, and godly wife, Lisa is a 3rd year medical student and as a recipient of the Air Force's Health Professional Scholarship Program scholarship, a 2d Lieutenant in the Air Force. As such, she has been blessed to have the Air Force pay for medical school so far and to receive a monthly stipend in return for active duty service after residency. As part of her application to the program, Lisa had passed the standard Department of Defense Medical Examination Review Board screening for new officer accessions and there were no pre-indications of anything related to a seizure disorder.
Following "the first seizure" on 19 January 2017 came the EEG and MRI. MRI: good - no tumor. EEG: bad - "epileptic", therefore, "start taking anti-epileptic drugs ... you'll be back in med school in a week and a half ..." and "you can't drive" says her neurologist. Nine hazy, weak-kneed, wheel-chair-using days later, seizure number two hits. Legs and right-arm spasms for 20 minutes, but she's conscious. "Must be epilepsy ... up the dosage" says her neurologist. From that day on for the next two months or so, Lisa had seizures almost daily, usually a couple times a day. A "long-term" in-hospital video and EEG monitoring study showed no indication of epileptic seizures. "They're non-epileptic, go see a psychiatrist, I'll see you in 6 weeks, but yes, you still have epilepsy" says the neurologist. Feeling dazed, confused, and somehow upset that the recorded seizures were actually non-epileptic, we return home and start the search for answers on our own. Internet searching, queries to doctor-friends, and help from Lisa's medical school result in two more neurologist visits (both epilepsy specialists; epileptologists), a re-analysis of the video-monitoring and EEG data, and a new conclusion: "You most likely don't have epilepsy; that first EEG was read incorrectly and you were misdiagnosed ... you shouldn't have been started on Keppra and need to start to taper off."
A second long-term in-hospital video and EEG study confirm the non-diagnosis. And in fact, taking Keppra could have made the seizures worse.
Once Keppra-free, Lisa had no seizures for over a two-week period. But, seizures keep happening, albeit less frequently, so the search for answers continued.
Meanwhile partway through all this, Lisa is informed by the Air Force that she will lose her medical school scholarship and monthly stipend, be medically discharged, and *might* have to pay everything back. Wonderful. More on this later.
The non-epileptic seizure world is much less well-defined and understood in the medical community than the epileptic one. Its victims are misunderstood and treatment is unclear and considered "soft science." This is my explanation after all we've learned: Your body decides to shut down based on a culmination and combination of latent and/or current physical, emotional, and psychological stressors or injuries. Once the first shut-down (seizure) takes place, the seizure becomes a new coping mechanism for the body and your subconscious mind chooses to enact that mechanism at will. Sometimes the triggers are evident; other times they are not. The recovery involves re-training your body and mind to not do this. Hence, the complexity and fuzziness of diagnosing and treating non-epileptic seizures.
Through our research, stumbling, bumbling, and much prayer, we have set upon the following treatment approach: a combination of medical managment with a really wonderful epileptologist, counseling, and neurofeedback (also called biofeedback) therapy. Neurofeedback uses sensors on your head to track brain wave activity. That activity is coupled to visual displays that the patient watches and separate data that the therapist monitors. The therapist can tune the displays so that a "pleasurable" result (eg, a calming soothing image and audio) are associated with "normative" brain waves and the lack of those images/sounds is associated with non-normative waves. By watching this passively, the patient's brain "trains" itself to follow more healthy brain patterns. This has been described as "brain-training" or "re-wiring the brain". This youtube video provides a straightforward explanation and if you're up for it, check out this article for a more scientific, but still understandable, explanation of neurofeedback, it's efficacy and it's applications.
I joke that neurofeedback costs as much per hour as a cheap lawyer. With the initial consult, testing, and therapy sessions, we are looking at a $4,160 bill at least -- as insurance does not cover this type of treatment.
We have also incurred additional expenses resulting from Lisa being unable to drive, namely, Uber/Lyft costs and additional mileage on the car from my driving. If Lisa does return to medical school (tentatively planning for September timeframe if treatment goes well), she will still be unable to drive for 6-12 months (depending on how you interpret Florida law). On the low end, I estimate a cost of ~$2000 for travel to/from clinic.
Lisa is determined to be mobile, safe, and practical. Her solution is an adult tricycle (don't laugh! ... ok, I do). It has large carrying baskets to haul her stuff around, allows her to pull over and stop safely if she feels a seizure coming, has gears so it can move at reasonable speeds, and most importantly ... comes in pink!
We are in the process of acquiring one. $400, which will help lower the overall estimated travel cost (already included in the estimate above).
A bit about money.
I've been conflicted about this whole go-fund-me process. The honest truth is we are financially secure, but this turn of events has significantly changed our financial posture. Six months ago we were giving generously, saving sufficiently, and supporting ourselves comfortably. With the loss of almost $2,000/month income (Lisa's stipend) and incurring additional costs associated with Lisa's treatment and inability to drive we had to reduce our giving, save the bare minimum, adjust daily expenses, and funnel remaining savings to medical and associated expenses. We are getting by, and we'll make it. But we'd like to recoup some of the costs we've incurred from Lisa's seizure disorder, and we also want to be able to give generously to people close to us who have needs greater than our own.
There is a significant unknown lurking ahead. The Air Force has not given Lisa an official disposition yet. We were informed informally that if she continues her medical education and can become a physician she may have to pay back all funds the Air Force spent on her scholarship and stipend. This would amount to approximately $170,000! That would definitely affect our financial security. At this point we are waiting for official word, and if we are asked to pay the debt, we'll appeal that decision. We anticipate this could take years to resolve.
Where your money will go.
We will put 50% aside to give friends and family in need. The other 50% will go to recoup Lisa's medical expenses.
In all of this we recognize the ultimate sovereignty and grace of our God and Savior, Jesus Christ. "As the heavens are higher than the earth, so are my ways higher than your ways..." (Isaiah 55:9a). Our ultimate peace and security rests in Jesus and not money. If you desire to show love and compassion for Lisa by giving, then this is an avenue to do it, and we hope to be godly stewards of your generosity.
- Amanda Jones
- Simon Lopez
- Camila Cabrera
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