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Priscilla's fight against IIH

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Hi everyone. My name is Priscilla. I'm a 36 year old mum of 5. I have a rare brain disease called IIH. All proceeds from this campaign will pay for my medical expenses, travel, living expenses and other appointments and tests. Here's my story ---- 11 years ago when i was 25 i was raced to bundaberg base hospital i suffered a major stroke and was hospitalised for a while. I lost my feelings of all on my left side and after lots of physiotherapy i had started getting better. During this time Doctor's couldn't figure out what caused my stroke, they put it down to the mini pill. After lots of tests, MRIs, CT scans they found a large arachnoid cyst the size of a golf ball on my memory lobe. Over the years i was back and forth to Brisbane for more tests with Neurosurgeons and specialists. They had decided to leave the cyst alone because it is too dangerous to operate as theres a chance of long term memory loss. Early in 2009 i fell pregnant and in November i went into labour while pushing out my son i had a mini stroke and this caused a bleed to my brain. A few weeks later the following symptoms started occurring weight gain, started getting headaches, blacking out, dizzy spells, slurring my words. After a doctors appointment i was sent for an MRI. A few day later i recieved my results. They discovered that i had a rare brain condition called Empty sella syndrome. Basically, my Pituitary gland is flattened or abnormally filled with spinal fluid. This puts me at extremely high risk of strokes, blood clots, cancer, aneurysm, seizures and even l blindness. Along after finding out this news i was diagnosed with Thyroid disease and was put on medication for the rest of my life. In 2016 i fell pregnant with my 5th child. I was a high risk patient again at the bundaberg base hospital but this time i had to telecommute with Brisbane Doctors too. As i got to 20 weeks the drs were concerned about my empty sella syndrome and the cyst so i was sent for another MRI. Results later turned out i have now Intracranial Hypertension. What is that you say? It is a condition where there is increased spinal fluid and blood being held by your brain in the skull and it causes increased pressure behind the eyes and in the skull possibly resulting in blindness. Daily experience neck pain, memory loss, terrible head pain and more. Pressure must be monitored by spinal tap or eye exam. Medications help manage CSF and if that is not successful a cranial shunt is placed in the head for spinal fluid to drain into the body cavity. Most often this illness is invisible. You could say i dont always look sick but inside i am waging a war #hopeforacure. I also got high blood pressure and was put on more medication. My daughter was born in November by an emergency c section at the bundaberg base hospital as the doctors not doing there job properly. As of a few weeks ago i started getting headaches and feel presure on my front temple, recently they have been increasing and getting worse. I also have become very forgetful i don't even remember what happened 2 hours ago, also getting really tired, exhausted, weak and blurry visions. Last week i decided to see my Dr again she was very concerned so sent me for an MRI. Yesterday 28 February 2018 the doctor wanted to see me she had horrible news. My cyst has grown, my fluid has increased and my empty sella syndrome has gotten worse. She is sending me to see a neurosurgeon for a Lumbar puncture to relieve some of the fluid off my brain and also to check my pressure. I hate asking for help but sometimes we need to swallow our pride and ask for help, and that is what I'm doing now.  If you can donate even $5, I would be eternally grateful. My family could use the help at this time in need thank you. ****Update finally after back and forth to Brisbane hospital, private hospitals and opthamologists. I am officially diagnosed with IIH on Thursday 23rd August and have started taking Diamox. If this doesn't work I will have an external shunt next****

Organizer

Cilla Rollings
Organizer
Winfield QLD

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