Brain Tumour Survivor

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PostPosted: Sat Feb 09, 2013 9:24 am 
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That depends on how good the neurologist is.

Sounds like added expense for something you could do yourself. That said that it may be worth a visit to see what sort of service they provide or find one that specialises in BT.

I see a remedial massage therapist for muscle stiffness and stretch.


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PostPosted: Sat Feb 09, 2013 10:37 pm 
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Hmm, I think I will hold off then. GP recommenended Ron Granot in Sydney, but I dont think he will have much to offer and given his specializes in other areas, its probably not suitable.

Update: anxiously waiting for appointment with charlie on the 19th. I'm much less nervous than previously and less of the uncontrollable sobbing with my partner.

So whats everyone doing for valentines day? :)


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PostPosted: Sat Feb 23, 2013 8:51 am 
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So sorry to hear of this in someone so young. Have you tried Dr Mark Davies. He works out of both St George Private and Public Hospitals (for the non insured). He sees all "urgent" cases immediately. Your GP needs to contact his office for the referral. His initial consultation fee is $400 however he is a "no gap" for surgery depending on health fund. He is very experienced in all forms of brain surgery.


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PostPosted: Sat Mar 02, 2013 6:14 pm 
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Hi Ashony,

I'm so sorry for what you and your partner are going through, it must be incredibly stressful and painful.

I'm 22 also, and my partner was diagnosed with a mixed oligo astrocytoma a year ago. He had about 40-50% of the tumour resected but was told by 3 neurosurgeons and an oncologist that the remaining tumour was inoperable without severe brain damage and probably ending up in a wheelchair. Charlie removed 98% of it in October with no major complications or side effects.

The only advice I could offer would be to get as many opinions as possible because each specialist will have a slightly different perspective and treatment plan. No one path is the right one, but we found it was better to know as many options as possible so you can make informed choices.

I hope your appointment with Charlie went well.


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PostPosted: Sat Mar 02, 2013 8:46 pm 
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Thank you for your suggestions, ideas, and support.

Well Charlie recommended surgery for us with around 40% chances of causing permanent damage and hastening quadraplegia. We are scared of those odds so we're still thinking about it. Actually we might send off our scans to john Hopkins hospital in America because apparently they're leading in brain tumor treatment and see if they support teos plan of care.

Thanks for sharing your story maddy. You don't know how good it is to hear the good stories. I wish you two the best.


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PostPosted: Thu Jul 04, 2013 6:09 pm 
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Hi Ashony did your partner end up having the surgery? I am new and have just seen this post. I hope all went ok if so.

Did you send off to John Hopkins? I was considering the same as I had an Astrocytoma removed at RPA Sydney in Sept 2012 but unfortunately have another that is on nerve 6/7 so too high and dangerous to remove. I have had stereo tactic radiation but apparently there is nothing else - in Aus anyway. I also have had a second opinion from the lovely Dr Smee.


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PostPosted: Wed Jul 31, 2013 9:21 pm 
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LMC171 wrote:
Hi Ashony did your partner end up having the surgery? I am new and have just seen this post. I hope all went ok if so.

Did you send off to John Hopkins? I was considering the same as I had an Astrocytoma removed at RPA Sydney in Sept 2012 but unfortunately have another that is on nerve 6/7 so too high and dangerous to remove. I have had stereo tactic radiation but apparently there is nothing else - in Aus anyway. I also have had a second opinion from the lovely Dr Smee.


Hi there,
We didnt end up sending them, I think we found out that the cost of sending the MRIs and for them to assess them was like $1G or something. We came to the conclusion that we'd rather put that money towards the surgery (which ended up being $120,000 due to no private health care :'( )

*UPDATE*

So after ALOT of obstacles (and let me emphasize ALOT), my partner ended up having the surgery in the private sector with Dr. Teo. It took around 10 hours and he successfully resected the brain stem tumour.
It has now been over 2 months since the surgery and he still remains in Prince of Wales ICU. He initially was intubated for the first month, and they felt that they needed to maintain a longer term artificial airway so they performed a tracheostomy. He remains on a ventilator via the tracheostomy but they are slowly weaning him off it (via sprints throughout the day). This was discussed with us prior to surgery because due to the area that they operated on and amount of manipulation performed, the nerves to his accessory muscles and lungs would not be able to allow him to breathe on his own in the initial stages.

He is also temporarily paralyzed/quadriplegic. He is beginning to move his fingers and lift his arm/ wiggle his toes (this was all expected prior to surgery). He is working closely with the physiotherapists and occupational therapists in regards to maintaining clear lungs and preventing further muscles shortening/ wasting in his arms/hands.

He initially struggled through sepsis/fevers and intermittent infections but was treated promptly. His last fever was 3 days ago. He currently struggles with constant spasms which he is on 2 hrly medication (baclofen).

The plan is to transfer him to the acute spinal unit/ rehab so he can hopefully start moving again. Charlie has visited him in ICU and said he promises my partner will walk again. We hold hope in this.

Pls feel free to ask me questions as I hope it will any information I give will help you guys.


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PostPosted: Tue Jun 24, 2014 4:27 am 
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If you were recommended by your surgeon then you must go, If your surgeon suggest you some other solution then you do what your surgeon told you to do.


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PostPosted: Tue Jul 08, 2014 2:41 pm 
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camexonda wrote:
If you were recommended by your surgeon then you must go, If your surgeon suggest you some other solution then you do what your surgeon told you to do.


Sorry but I'm not sure I quite follow? Where do you mean I must go?


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PostPosted: Sat Aug 23, 2014 10:10 am 
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Dr Teo is a fine surgeon but if you are faced with paying up to $80k as a private patient or going through the public system knowing you are getting a well trained surgeon?

Dr John Fuller President Neurosurgical Society of Australasia was quoted recently there are many neurosurgeons as well trained as Dr Teo and there are. But few have the extensive experience.

So if you are a private patient you can choose Dr Teo or another similarly experienced surgeon. If you are a public patient you could put yourself through the stress of trying to raise $80k or there are other options. One is Dr Teo supervises your surgery, not sure what the costs are but certainly much less than $80k. Another is select another surgeon who removes at least 50 BT's a year and request referral to see them.

I don't believe a recent article where a public patient was told they would need to wait 6 months for an operation. Hospitals treat based on priority, the only trick is not to be treated by an inexperienced surgeon in the public system.


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