Jennifer's Life Saving Neck Surgery

Hello Friends and Family. A bunch of people in our lives have asked how they can help. I decided to post this explaining Jennifer's current situation.

Jen's had many bizarre health problems over the last decade. For the most part, they've been managed through lifestyle choices and healthy living, though that's stopped working recently. The last 6 months presented a number of new symptoms and really hard challenges. In August 2021 she was diagnosed with Narcolepsy. In September, she started having bouts of paralysis, being unable to move her legs for up to 30 minutes at a time. Most of the time Jen could make it to a chair or couch, but there were a handful of times where she would just be stuck on the floor. These attacks quickly progressed into full-body paralysis after any light activity over 8 weeks or so. Near the end of October, Jen had her first Seizure-like episode, followed by severe paralysis and rapidly worsening pain. Her symptoms continued to worsen, and our Doctor(s) had no idea what was going on.

Thanks to Jens's google-fu and days stuck in bed unable to move, she found her symptoms to be consistent with craniocervical instability. We ordered the appropriate imaging, enabling a couple of Neurologists to confirm our suspicion and diagnose craniocervical instability at her C1-C2 vertebrae. CCI is usually caused by a car accident or other whip-lash event, but in Jen's case, it probably has more to do with her diagnosis of Ehlers-Danlos Syndrome.

Jennifer's case is severe. For some context, 3mm of instability is enough for people to claim disability insurance. Jennifer's instability measures around 9.1mm. Such severe instability impedes vertebral artery blood flow

and puts pressure on the spinal cord. Impeding blood flow to the brain and compressing the spinal cord causes a lot of pain and other neurological symptoms. Typing this out feels dramatic, but left untreated CCI will kill her. Right now, she can't drive, work, or even sit up for very long. Traveling in a vehicle is very taxing, and causes the seizure-like episodes mentioned earlier. Jen spends most days confined to her bed, doing as much as possible before the paralysis and seizures take over for however long. Some of the worst episodes have been 7+ hours, alternating between violent shaking and full-body paralysis.

We've explored several options and have decided on a C1-C2 fusion. The type of fusion we'd like to undergo is as Ehlers-Danlos friendly as they come. Dr. Joel Franck in Tampa Florida has performed the operation over 180 times with great success. We've scheduled the operation with him for March 1st.

Our friends, family, and neighbors have been incredibly supportive. We've received many meals, and our daughters have been well cared for by a few wonderful babysitters. People keep asking how they can help, and it's finally come down to funding. We're about $12k into this adventure so far, and will need more before it's over. The procedure itself will cost $70k ($30k for the surgeon, and $40k for SurgCenter), with another ~$7000 in post-op care. I'll get a more specific list of expenses together soon. For now, if you can post this information where generous souls may see it, please do so!

For those of you who are curious, I'll get links to Jen's imaging and other helpful information about her condition posted here in the next week.