Alana’s fight with a Pineal Gland Cyst

Hi all, 

For those who don’t know I have been diagnosed with a rare cyst which is located in the centre of my brain with.  From my knowledge and one MRI it’s a cyst but need further testing to rule out anything else. My health has declined over last 2 months with being put on seizure medication and unable to drive most days due to my vision being impaired. I’ve been getting MS/Parkinson’s like symptoms (body twitching that I can’t control

update: I’ve had referrals now sent to Adelaide but I really am still hoping to see doctor Charlie Teo as he is the guy for this rare job. I don’t want to be with any random neurosurgeon as it is in the middle of my brain. 

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***Edit, I now wish to return to Adelaide and see a specialist there. I have had a few specialist sent to me and having family and friends in Adelaide that can support me through this as recovery is extreme.

 I have also been put on tablets to prevent my absent seizures I am now experiencing daily! 


*** Still an option*** I would ideally like to head over to Sydney for a consultation with Doctor Charlie Teo as he is an amazing neurosurgeon with the best knowledge and has done this surgery before. Surgery with Doctor Teo is $120,000.00, consultation alone is $850. 

I’m not one to ever ask for hand outs and this is the hardest thing I’ve ever had to do. But I never thought I would ever need to start a page like this. 

Here is my short story:

For a good year I have been going to the doctor having test after test as I’ve been extremely unwell, I’ve got worse the last 5 months, my doctor has been stumped as to why I’ve been so unwell. Finally he sent me for an MRI of the brain and there it was right in the middle of my brain. To be told by your doctor you have something growing in your brain and how rare it is, it’s the most scariest thing I’ve ever dealt with in my life. 

main symptoms and constant : nausea/vertigo, loss of vision, blurred vision and speech, extreme fatigue or insomnia some nights, vomiting, light sensitivity, memory loss, migraines, bilateral ear pain, muscle spasms, tremors, absent/grand mal seizures (these seizures have started recently) and more. 

I feel stuck in my own body unable to leave bed for days and unable to do normal daily things, I go shopping with my sunglasses on and constantly forget what I’m doing there as I’m disoriented. I can’t work and some days I can’t take my daughter to school.
Nothing more in this world I want is to be healthy again for my daughter so her and I can finally enjoy life again together, this has been hard on her (she doesn’t know why I’m unwell) I have no quality of life at the moment.  

In Cairns we don’t have neurosurgeon’s available and one comes up every month from Townsville, I don’t know if this surgeon would even operate on this part of the brain either. 

Thank you all for reading till now and if you have any questions please ask as I’m happy to chat

**I will be updating this page as time goes on**

much love - Alana xx

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Organizer

Alana Kai 
Organizer
Trinity Beach, QLD
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