Student with sinking skull faces life-changing surgery in fight to finish PhD
A Queensland woman whose skull is ‘slipping from her neck’ faces an anxious wait to see if doctors can perform life changing surgery to fix her head in place.
Kirstin Maltby, 32, has been diagnosed with craniocervical instability – a rare complication from her genetic connective tissue disorder, where her spine can’t support the weight of her skull.
“The bones in the neck are slipping each time I move and my skull is sinking,” she explained to Yahoo7 News.
It seriously hampers her ability to stand, breath and digest food. The pain is so severe she has an implant which releases morphine into her spine.
She is bedridden the majority of her day.
Her latest, potentially fatal diagnosis comes after a lifetime of ill health which first started at the tender age of 12.
She was diagnosed with Ehlers-Danlos syndrome meaning her joints are vulnerable to dislocation from any slight movement.
“Things like sneezing I can dislocate my joints easily,” she said.
Among multiple other diagnoses over the years was intracranial hypertension which means she has too much fluid inside her brain.
Following multiple brain surgeries and treatment, which she estimates have set her back the price of “a considerable house deposit,” she is now unable to support her head.
Diagnosis puts university dream in doubt
“At the moment I spend 90 per cent of my time in bed and I quit my PhD,” she revealed.
The student, who now lives in Sydney, was halfway through her advanced research in sleep medicine at Notre Dame University when she was forced to quit due to her overwhelming symptoms.
“I feel terrible about having to stop,” she said.
“I uprooted my entire life to move interstate alone. Now halfway through unless a miracle happens, I will be unable to continue my PhD.
“Its absolutely devastating for me as I chose to spend the limited energy I had between surgeries studying to get here.”
She revealed she’d studied “for years” from her bed and after achieving her bachelor’s degree she was accepted onto her PHD in 2015.
Lifeline offered by Australian doctors
She is now looking to become an Australian-first and receive surgery which will fuse her neck and skull together – a procedure which has only been performed a handful of times in the country and never before on someone with Ms Maltby’s list of diagnoses.
“I’m the guinea pig at the moment,” she admitted after finally finding a medical team willing to take on the high-risk surgery.
Doctors have placed her in a halo brace which is holding her head in firmly in place and is testing to see if she will be suitable for the surgery.
“I’m basically trapped. I feel like a turtle,” she said of her new apparatus.
She now faces an anxious three-week wait to see if doctors will approve the surgery.
Ms Maltby said if she’s turned down, she doesn’t know what she can turn to to improve her deteriorating situation.
“I really don’t want to think about that right now,” she said, noting the condition could easily end her life.
While surviving on the disability pension, Ms Maltby and her family struggle to fund her extensive surgeries and if her latest operation goes ahead she will again be pushed to her financial limits.
Due to suffering chiari malformation where the base of her brain herniates crushing nerves and blocking spinal fluid, her surgery would have to be specially adapted, only adding to the cost.
She has set up a GoFundMe page to help cover the costs of the operation which will put her on the path of realising her dream.
“The only choice until now was to go overseas and spend hundreds of thousands of dollars,” she said.
“I am hoping they agree to do the fusion and I am able to graduate and put Dr in front of my name.”
Do you have a story tip? Email: y7newsroom@yahoo7.com.au.
You can also follow us on Facebook and Twitter and stay up to date with the latest news with Yahoo7’s daily newsletter. Sign up here.
