Brain Tumour Survivor

[ABL87]

Hi everyone, it has been a while since I have posted on this site. Im not sure if you guys remember me, my sister is 25 and was diagnosed with very large (8.5cmx5.8cmx5.5cm) grade 2 astrocytoma tumor in her left frontal lobe, reaching dwn to her thalamas, midbrain and basal ganglia. 3 neurosurgeons in Brisbane deemed it 'inoperable' and wanted to give pallaitive radiation. We were not happy with this.
Surgery with Charlie Teo was booked for July 7, but then got postposed to July 21 (Charlie had to fly overseas to perform emergency surgery on a little girl).
Charlie successfully removed 80% of the tumour. He is genius i tell you... surgeons in Brisbane originally said they could only remove 40%, and then they changed their minds and didnt want to operate at all, and said only if the tumour continues to grow they will debulk it by ONLY 25%. "Anymore and she would be permanently disabled". Yeah RIGHT.
So My sister had a great 6 hour surgery last Wednesday :) Charlie went through her eyebrow and got 80% out. She wont even have any visible scars, her eyebrow hair covers the scar!
As for the risks, Charlie said 15% risk of 'some kind of permanent disability". So 85% chance she would come out okay. Straight after surgery she had slight weakness in her right arm, but we saw her about half an hour after surgery and she waived at us with her right hand! The weakness went away within minutes... she also was talking to us right after surgery! One of our worries is that her speech would be affected, but she is pronouncing words just fine :) Of course her words were quite muddled up for a few days after the surgery, of course this is normal. She was in a room with 3 other brain operation patients and they were all talking jibberish! Was quite funny!
We are back in Brisbane now and she is at home recovering. Was vomitting a bit and had very bad pains, Charlie took her of the steroids which was a bit of a shock as we know they need to be weened off them gradually... but he said he really wants her to stay off them and if she is still feeling very unwell then to go back on them for maybe 1 or 2 days but try get her off them again.. She hates the steroids though and doesnt want to go back on them, what a trooper.
As for now? Well we are waiting for pathology to call us and tell us what grade the tumour was. We are hoping it hasnt upgraded to a 3 or 4. We should be receiving a phone call today.
We have another appointment with Charlie in 6 weeks time, he said he is thinking he might be able to go in and get the rest!! Can you believe it!!! He said by looking at the rest of it during the operation, he is almost 100% certain it is still a grade 2. We are praying.

Just wanted to tell everybody, please do your research. If we listened to the first neurosurgeons, my sister would have already had 5 weeks of radiation by now. Charlie said with a tumor her size, it was ridiculous for them to even suggest radiation, as her brain would swell SO much. When we went back to the original radiologist and said "we are sorry we are getting surgery with Charlie Teo instead of having radiation", he turned around and said "oh, okay well yes to tell you the truth I am glad you are having surgery, this tumor needs to be smaller before it is radiated.." We couldnt believe our ears. The lies, little white lies they tell you. You think your getting good medical treatment... its crazy. If we didnt do our research, who knows where we would be right now...
Dont give up hope guys. And just because they are NEUROSURGEONS does not mean they are RIGHT.

[stacy]

All I can say is FAN bloody TASTIC!!!!
Stacy

[kenobewan]

Great result!

Thanks for sharing your experience. It really is a maze and difficult to get the right advice. Good on you for making some tough choices :).

[sunny]

Hi April,

Of course we remember you!

So glad the surgery went great.

Love and best wishes to all your family - it must be so great to be back home in Brisbane.

Thanks for letting us all know of your success.

[hugsnkisses]

Hi. Been waiting to hear how Tess got on. SO happy for you. Hopefully everything from now will be good news. Keep us posted. I am thinking of you all and sending my very best wishes to you and your family. You did the right thing!!!!! xx