In December 2015, Kelly had a decompression surgery in New York City to help alleviate the problem. During Kelly’s surgery, the doctor drilled out a part of her skull bone to expose the dura (the sac that holds the brain, spine and cerebral spinal fluid). He then opened the dura to expose the bottom part of the cerebellum - the cerebral tonsils. Due to prolonged compression, the cerebral tonsils had to be removed. He then placed a piece of her own tissue over the dura and stitched her back up. Unfortunately, this surgery did not turn out as we’d all hoped, and she now is facing even more challenges than before.
Kelly has been diagnosed with a CSF leak—this is when a hole or tear in the dura develops. When you have a CSF leak, the fluid that surrounds your brain leaks out every time you are upright, and your brain is no longer properly supported, causing extreme pain and pressure in your head. It also causes a wide range of other debilitating neurological problems, including eye pain and blurry vision, tinnitus, ear pain, photophobia (sensitivity to sound), neck pain, dizziness and balance issues, nausea, cognitive issues, and memory loss.
Additionally, Kelly has developed a related condition- POTS (Postural Orthostatic Tachycardia Syndrome). This condition is characterized by a dramatic increase in heart rate upon sitting or standing.
For the last eight months she has been seeing Dr. Schievink a Neurosurgeon at Cedars Sinai in California. He is the world’s leading expert in CSF leaks. After five trips to L.A., Kelly has had seven blood patches, but none of them have provided lasting relief. Her neurosurgeon is now recommending dural reduction surgery. In this surgery the doctor will remove a portion of the bone in several vertebrae to access the dura in her spine. He will then resect the dura.
In a matter of days, Kelly will travel to Los Angeles and undergo her second major surgery.
Here’s what we can do:
I was amazed when I read that the GoFundMe website is the number one in the nation for medical cost fundraising. Overall, it has helped raise over three billion dollars for people with diseases, both common and rare! What an incredible accomplishment! I’m simply thrilled that we now have the chance to raise money for Kelly via this “GoFundMe” page and to help her fight this rare condition.
With a heavy heart but a lot hope, I ask you to please donate on behalf of our friend Kelly! We all know that even with solid insurance, medical costs are overwhelming for most people. Traveling to see specialists, doctor co-pays, hospital bills, wages lost due to illness—this adds up over time. Kelly’s only shot at getting better is to have this surgery! Being sick is expensive. Being sick over a long period of time… it’s devastating!
Kelly estimates that she will need about $7500.00 to cover travel, hotel for her mother, and out-of-pocket medical expenses for this trip. Please be as generous as you can, and help her and her family fight this condition!!
For anyone who knows Kelly, they know her as a smiling, active person who loves life! The last two years, however, her health has taken a serious and devastating turn. I know Kelly and her family would appreciate any donation, big or small! If we all pull together, we can make this time just a little easier by alleviating some of the financial stress that comes with long term illness! If you cannot donate, prayers are welcome, too! Thank you!
And stay tuned for updates about her progress in the coming days!!
- Corbin Pulliam
- Jeff Krosse
- Greg Miller
- Mark Rainer
- Lisa Larsen
Organizer and beneficiary
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