Acystus - Cortney's Cause
Donation protected
Please help us raise the urgently needed money to help our 15 year old daughter Cortney, get the medical treatment and rehabilitation support she desperately needs to treat her Pineal Cyst/Tumour and live a normal life.
Since the age of 2 Cortney's health has been a rollercoaster ride with more "down's than up's". Constantly suffering from debilitating migraines and other medical problems, Cortney was referred to specialists at PMH for treatment and management.
An MRI in 2008 found an "incidental pineal cyst" but it wasn't until a few years later that we were informed of it!
Fast forward a few more years and separate MRI reports from 2012 and 2013 report the pineal cyst to be stable and that there are no other abnormalities to be seen in the reports. (Yep.. Pineal cysts/tumours are ABNORMAL findings!)
In mid-February 2014 Cortney had another MRI, and we just received the Medicare form with item number 63001 being for services of MRI Head: Tumour of brain or cranial meninges (and 63491 being for the contrast dye). We rang Medicare to confirm the service numbers.. and yep.. they confirmed that it was for an MRI with contrast of a brain tumour!
NEVER ONCE WERE WE TOLD SHE HAD A BENIGN BRAIN TUMOUR by her doctor/s!
We found that out ourselves after spending years following every treatment and medication that the doctors told us to, including "forced" mental health assessments before they would offer further treatment to Cortney. The treating doctors made her feel as if it was "all in her head". She is scared by speaking out, that the medical care and support she has now, will be withdrawn!
We have done everything right!!! We were jumping through all the hoops and making Cortney take loads of medications (some with really horrible side effects) in a hope that she would be well again.. Nothing has worked!
Cortney's health has deteriorated rapidly and in July 2013, Cortney had a VP shunt inserted to help relieve the hydrocephalus/pressure in her brain and behind her eyes.
Delays in treatment/s have resulted in Cortney having permanent damage to her retinas and Cortney spending most of her time wheelchair bound. Cortney is now home schooled and needs care 24/7! She requires daily physiotherapy and rehabilitation treatments (Chiropractic/NCi) and pain relief/nausea medications just to get through day by day and most of this isn't covered by medicare nor does it come cheap! The medications are no longer working properly and the pressure is back..
All Cortney's wants these days is to live without the pain and suffering and to be treated with respect by those who have the job of providing her care.
As parents hearing medical professionals say "Sorry we can't fix her! Take her home and bring her back if she doesn't get better! Keep bringing her back until we get it right!" has us running scared.
We have asked ourselves so many times
"If they can't get it right the 1st, 10th, 100th or 1000th time, What on earth makes them think that they will get it right the next time they try?"
When is enough, "Enough"?
We just want our beautiful girl well again!
We hope that either Dr Charlie Teo in NSW or Dr Dong Kim in Houston (USA) will offer Cortney surgery to remove her Pineal Cyst/Tumour in the near future. Costs of surgery and associated rehabilitation is estimated to be between $80,000.00 and $150,000.00 (Australian Dollars). Any money not used for Cortney's treatment and care will be donated back into the community to assist others like her - medically diagnosed with a symptomatic pineal cyst/tumor/mass/lesion.
We are asking everyone we know to "Dig Deep", pop your hands in your pocket and make a donation to help Cortney get well again.
Without the money, there is no way to get an appointment with the specialists to get treatement/surgery to remove the pineal cyst/tumour.
Both Cortney's father and I are on the centerlink support pension (disability/carers) we can not afford to pay for the expensive treatment/s she needs and deserves. We don't like that we have to resort to asking for help like this but we will do anything just to see Cortney well again!
Please from the bottom of our hearts help our little girl!
xx Lynda and Peter Vinten.
P.S.
Cortney's Wish.
Cortney's one wish is to prevent others from going through what she is going through!
Want to know more?
In WA (and most other states/countries) doctors say that pineal cysts/masses/lesions/tumours are incidental findings, that they don't cause any health problems until they grow too big and that they won't kill you. BUT.. We are here to tell these doctors otherwise!
Any pineal cyst/mass/lesion/tumour can be symptomatic - regardless of size and it CAN kill you if misdiagnosed or left untreated. It steals away your quality of life and if you let it, it can steal your hopes and dreams too.
We are pushing our loved-ones/families/patients and medical professionals to the brink of despair finanically and emotionally, with the lack of treatment options and ongoing support to those affected by/medically diagnosed with Pineal Cysts/Masses/Lesions/Tumours.
What can be done?
Very soon, with the help of our wonderful local MP Mr David Templeman MLA, we will be lodging a grievance in the WA parliament to get Pineal cysts recognised as "Benign Pineal Gland Tumours". We are asking the government of Western Australia, to change the way that all patients are being treated.
As quoted from the World Health Organisation (WHO)
"The key message here is that uni-dimensional solutions to complex medical problems do not work. Therefore effective treatment for chronic conditions requires a transformation of health care systems, away from delivery focused on episodic care in response to acute illness, and towards a comprehensive system of care that is designed to meet the long-term needs of patients."
This is exactly the type of care that pineal cyst/mass/lesion/tumour patients need and deserve!
In our words we are asking the government to make a flexible health care plan that can be tailored to the individual patient's needs.
We are asking Doctors and medical professionals to:
* Listen to the patient about their symptoms - They will know more about the pain and suffering than any text book you could ever read.
* Listen to the patient about what kind of medical care they want and need.
Isn't it time that Doctors become more involved in the recovery process?
We need our treating Doctors to:
* Help the patient put a plan in place to suit the patients needs (not one that fits neatly into a little "box") but a tailored plan to help the patient achieve the best possible recovery.
* If need be, help find the funding to get the patient the care that they need - don't wipe your hands of them when the become a candidate for the "too hard basket!"
This link leads to a very informative webcast by Dr Dong Kim in Houston USA regarding the Advanced treatment of Pineal Cysts/Tumours www.memorialhermann.adobeconnect.com/_a97675836/p727Ibiwmol/?launcher=false&fcsCoontent=true&pbMode=normal
Please allow 6-6.5 minutes before the audio can be heard.. and please feel free to fast forward to the good bits! There's even a Q & A Session at the end of the webcast.
Since the age of 2 Cortney's health has been a rollercoaster ride with more "down's than up's". Constantly suffering from debilitating migraines and other medical problems, Cortney was referred to specialists at PMH for treatment and management.
An MRI in 2008 found an "incidental pineal cyst" but it wasn't until a few years later that we were informed of it!
Fast forward a few more years and separate MRI reports from 2012 and 2013 report the pineal cyst to be stable and that there are no other abnormalities to be seen in the reports. (Yep.. Pineal cysts/tumours are ABNORMAL findings!)
In mid-February 2014 Cortney had another MRI, and we just received the Medicare form with item number 63001 being for services of MRI Head: Tumour of brain or cranial meninges (and 63491 being for the contrast dye). We rang Medicare to confirm the service numbers.. and yep.. they confirmed that it was for an MRI with contrast of a brain tumour!
NEVER ONCE WERE WE TOLD SHE HAD A BENIGN BRAIN TUMOUR by her doctor/s!
We found that out ourselves after spending years following every treatment and medication that the doctors told us to, including "forced" mental health assessments before they would offer further treatment to Cortney. The treating doctors made her feel as if it was "all in her head". She is scared by speaking out, that the medical care and support she has now, will be withdrawn!
We have done everything right!!! We were jumping through all the hoops and making Cortney take loads of medications (some with really horrible side effects) in a hope that she would be well again.. Nothing has worked!
Cortney's health has deteriorated rapidly and in July 2013, Cortney had a VP shunt inserted to help relieve the hydrocephalus/pressure in her brain and behind her eyes.
Delays in treatment/s have resulted in Cortney having permanent damage to her retinas and Cortney spending most of her time wheelchair bound. Cortney is now home schooled and needs care 24/7! She requires daily physiotherapy and rehabilitation treatments (Chiropractic/NCi) and pain relief/nausea medications just to get through day by day and most of this isn't covered by medicare nor does it come cheap! The medications are no longer working properly and the pressure is back..
All Cortney's wants these days is to live without the pain and suffering and to be treated with respect by those who have the job of providing her care.
As parents hearing medical professionals say "Sorry we can't fix her! Take her home and bring her back if she doesn't get better! Keep bringing her back until we get it right!" has us running scared.
We have asked ourselves so many times
"If they can't get it right the 1st, 10th, 100th or 1000th time, What on earth makes them think that they will get it right the next time they try?"
When is enough, "Enough"?
We just want our beautiful girl well again!
We hope that either Dr Charlie Teo in NSW or Dr Dong Kim in Houston (USA) will offer Cortney surgery to remove her Pineal Cyst/Tumour in the near future. Costs of surgery and associated rehabilitation is estimated to be between $80,000.00 and $150,000.00 (Australian Dollars). Any money not used for Cortney's treatment and care will be donated back into the community to assist others like her - medically diagnosed with a symptomatic pineal cyst/tumor/mass/lesion.
We are asking everyone we know to "Dig Deep", pop your hands in your pocket and make a donation to help Cortney get well again.
Without the money, there is no way to get an appointment with the specialists to get treatement/surgery to remove the pineal cyst/tumour.
Both Cortney's father and I are on the centerlink support pension (disability/carers) we can not afford to pay for the expensive treatment/s she needs and deserves. We don't like that we have to resort to asking for help like this but we will do anything just to see Cortney well again!
Please from the bottom of our hearts help our little girl!
xx Lynda and Peter Vinten.
P.S.
Cortney's Wish.
Cortney's one wish is to prevent others from going through what she is going through!
Want to know more?
In WA (and most other states/countries) doctors say that pineal cysts/masses/lesions/tumours are incidental findings, that they don't cause any health problems until they grow too big and that they won't kill you. BUT.. We are here to tell these doctors otherwise!
Any pineal cyst/mass/lesion/tumour can be symptomatic - regardless of size and it CAN kill you if misdiagnosed or left untreated. It steals away your quality of life and if you let it, it can steal your hopes and dreams too.
We are pushing our loved-ones/families/patients and medical professionals to the brink of despair finanically and emotionally, with the lack of treatment options and ongoing support to those affected by/medically diagnosed with Pineal Cysts/Masses/Lesions/Tumours.
What can be done?
Very soon, with the help of our wonderful local MP Mr David Templeman MLA, we will be lodging a grievance in the WA parliament to get Pineal cysts recognised as "Benign Pineal Gland Tumours". We are asking the government of Western Australia, to change the way that all patients are being treated.
As quoted from the World Health Organisation (WHO)
"The key message here is that uni-dimensional solutions to complex medical problems do not work. Therefore effective treatment for chronic conditions requires a transformation of health care systems, away from delivery focused on episodic care in response to acute illness, and towards a comprehensive system of care that is designed to meet the long-term needs of patients."
This is exactly the type of care that pineal cyst/mass/lesion/tumour patients need and deserve!
In our words we are asking the government to make a flexible health care plan that can be tailored to the individual patient's needs.
We are asking Doctors and medical professionals to:
* Listen to the patient about their symptoms - They will know more about the pain and suffering than any text book you could ever read.
* Listen to the patient about what kind of medical care they want and need.
Isn't it time that Doctors become more involved in the recovery process?
We need our treating Doctors to:
* Help the patient put a plan in place to suit the patients needs (not one that fits neatly into a little "box") but a tailored plan to help the patient achieve the best possible recovery.
* If need be, help find the funding to get the patient the care that they need - don't wipe your hands of them when the become a candidate for the "too hard basket!"
This link leads to a very informative webcast by Dr Dong Kim in Houston USA regarding the Advanced treatment of Pineal Cysts/Tumours www.memorialhermann.adobeconnect.com/_a97675836/p727Ibiwmol/?launcher=false&fcsCoontent=true&pbMode=normal
Please allow 6-6.5 minutes before the audio can be heard.. and please feel free to fast forward to the good bits! There's even a Q & A Session at the end of the webcast.
Organizer
Lynda Vinten
Organizer
Falcon WA
