PLEASE, Help Me Get Life-Changing Surgery in Rhode Island.

Hi, my name is Kristen Thomas. I'm 38 and I’ve spent my life pushing through health issues, but now I need your help. I’ve been battling a complex combination of severe medical conditions that just keep getting worse, and I’m raising funds to afford my next critical surgery in Rhode Island. I live about 5 and a half hours away in Pennsylvania.

I was born with spina bifida, but I wasn’t diagnosed until a month ago! And when I tell you I had to FIGHT for anyone to even take me seriously... I'm not exaggerating. I don't think anyone else has the specific form I have... I'm missing multiple thoracic spinous processes. Over the years, my condition worsened since I didn't know I had it, leading to intense pain, mobility issues, and the need for multiple surgeries. So far, I have had 18 surgeries, including three brain surgeries and in December for major spine surgery. It included an L2-5 laminectomy, left L3-4 microdiscectomy, L4-5 transforaminal interbody fusion, L2-5 posterolateral fusion with my bone as well as deceased donor bone grafts, and fixing extremely bulging discs and veins. And I already have retrolisthesis in one of the fusions, which is another rare spinal condition. :'(

Unfortunately, my fight isn’t over. I need another surgery to untether my spinal cord, which is causing severe nerve damage and weakness. Without it, my ability to walk and function will continue to deteriorate. After that, my 20th surgery for a thyroglossal duct cyst behind my hyoid bone still needs to be removed so it cannot become cancerous in the future.

In addition to spina bifida and tethered cord syndrome, I have been diagnosed with:

Pseudotumor cerebri (causing high brain pressure, requiring a VP shunt)

Degenerative disc disease

Stage 3 endometriosis

PCOS, Hashimoto’s, hypothyroidism, and type 2 diabetes

Fibromyalgia

Epstein-Barr virus

Hypercholesterolemia and hyperlipidemia are also highly suspected, and I need to get a special blood test to confirm.

Severe knee and leg weakness from years of undiagnosed spinal issues as well as issues with my bladder due to the tethered cord.

Why I Need Your Help

I have exhausted our finances from my lifetime of severe health issues and fighting to stay mobile and functional. Insurance covers some costs, but not everything. Travel expenses, medical copays, deductibles, lodging, and aftercare are beyond what we can manage right now. Unfortunately the hospital cannot promise my husband is able to stay in my room with me due to not knowing if a single room is available until the day of my surgery. And even if he can the first night, it could change at any time if they need that room for someone with covid, etc. If that happens, we cannot afford a motel for him for the week, so it makes it impossible to go without knowing we'd have the funds for him to stay somewhere nearby. We also need to go the day prior to my surgery to ensure we're there for surgery that morning... Which means we'll need to pay for a motel the night prior to surgery, as well as possibly on the drive home if it's too much to handle for me post op.

I need this surgery to slow the progression of my nerve damage and give me the best chance at a better quality of life. Plus, to be frank, I've never experienced a single day in life without a tethered spinal cord and I would really like to see how it feels. :(

Every donation, big or small, will help me get the treatment I desperately need. If you’re unable to donate, please consider sharing my story and also sending good vibes, prayers, love, and kind words.

Your kindness and generosity mean the world to me. Thank you for being a part of my fight.

With all my love,

Kristen Thomas xo