I was on Facebook following Dolphin Player Sean Smith when I read I saw a link that he placed on his wall of a friend, 31 Year old Maurya.
This is her story:
magine finding out at 31 that you have a rare brain tumor
In May 2010, after Maurya insisted on a CT Scan for another medical condition, to everyone’s surprise including the doctors, the scan showed a mass. Since then, a couple of MRI’s have been done to better understand what type of mass we are talking about. She’s seen a couple of Neurosurgeon’s and the cyst (tumor) is located behind the left eye positioned near the carotid artery, numerous nerves and not to mention pressing on the brain membrane, which causes a great deal of pain and is being managed by medication.
Currently she is only 1 of a handful of reported cases with this type of cyst in the brain but the only documented case with the positioning/placement of this type of cyst. The surgeons are confident it is not cancerous but are unable to do a biopsy. Due to the location of the cyst, the biopsy procedure is the same as the surgical removal procedure so they are unable to confirm that until they remove the mass.
There are many risks with any surgery and in Maurya’s case it could be as minimal as facial numbness, double vision or as severe as facial paralysis or disfigurement, lose of eye muscle control, possible blindness and other possible paralyses or loss of motor function.
The upside right now is that Maurya is young, healthy and active but as you can imagine scared (as her loved ones are also).
In June 2010, Maurya met with one of the Neurosurgeon’s, who left her honestly frightened by the predicted outcome and the surgery itself (disfigurement, paralysis, blindness etc.) Their approach was to wait and see on her other medical condition but this was why this mass was not detected sooner; Had this cyst been found 3 years ago when the other medical condition presented itself, who is to say the prognosis would be the same.
When asking various physicians and other industry related colleagues across the nation, there was only one surgeon’s name continually recommended for this rare case, Dr. Mitchel Berger at UC San Francisco. UC San Francisco’s Neurosurgery department is ranked #3 in the nation. When Maurya met with Dr. Berger in October he took time to review and discuss her case with her. He discussed in detail the removal procedure (which was nowhere near what was described by the Neurosurgeon she saw in June), what areas are or are not affected by the tumor and the prognosis (3% – 7% probability of facial numbness & short term double vision). This, of course, is the best case scenario which Maurya is hopeful for.
Most people can relate to the emotional trauma for someone so young trying to make sense of the information given during the initial neurosurgery consult and the lack of data/research available for this rare cyst (tumor). After meeting with the various surgeons and taking all of the above into consideration, weighing the options provided, understanding that with any surgery there are risks (even loss of life), Maurya and her family/loved ones feel her only decision should be to go with Dr. Berger at UC San Francisco.
With this decision comes a huge financial cost. The surgery at UC San Francisco is the best option but will not be covered so Maurya has been in search of a new insurance plan. The struggle is that this is now a pre-existing condition and could be denied but Maurya stays hopeful that she will find a plan to cover the $500K+ surgery, understanding it comes with a high deductible. For now, Maurya is paying for her visits on her own. If the pain can continue to be managed with medication and no additional symptoms arise she is looking at surgery in late February 2011.
You can read more and where to donate on the link below.
(Story linked HERE).
Stories like this happen every day, we just don’t always here about it. It is sad to hear someone with such a rare cancer, someone who can’t afford it due to insurance yet, who can put a price on LIFE? I wrote about Madison a baby girl with a rare cancer tumor, and she has overcome the odds and is beating it, I believe in Miracles, I believe in Fate, and Hope, and with a little encouragement from others, anything can happen.
xo,
kristin nicole
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