Anyone from NZ or Australia?

Discussions about the illness, treatments, doctors, etc.

Anyone from NZ or Australia?

Postby Rosan » Sun Nov 14, 2010 10:17 am

Hi

I have just joined this forum. My son, age 25, has just been diagnosed with a right parietal lobe CA following seizures and other neuro symptoms. Although there is a public health system here we have had to go privately to get MRI and EEG tests and specialist appointments as the delays would have been long in the public system. However our insurance won't cover overseas treatment or if it found to be congenital. We are from the UK originally, but the NHS there won't cover expats now, apparently.

My question is - does anyone know of a good neurosurgeon in NZ or Australia with experience of treating CAs? Or can anyone tell me what the cost is likely to be of treatment in the UK or the US?

We may have to look at fundraising or selling our house to get him treatment by someone with sufficient experience.

We don't know yet if he has more than one CA - the neurologist was a bit vague (or he didn't take in what she said as he got the diagnosis over the phone while at work last week).

Thanks - and all the best to all of you.
Rosan
 
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Re: Anyone from NZ or Australia?

Postby vandy » Mon Nov 15, 2010 3:54 pm

Hi Rosan,

Welcome to the forum. You found an excellent website with an enormous amount of information and great source of different experiences. Connie Lee might be able to direct you into the right direction of a neurosurgeon in Australia or NZ. I do know that Dr. Spetzler in AZ (USA), who is one of the top doctors in this field does do a free diagnosis. You just have to mail copies of your MRI and paperwork to him. Linda - Fan of Barrow, is also from Canada and had surgery by him this past summer. She might be able to answer the question of cost. Although our province health care system has been forced to pay for a surgery similar to hers, I don't know if it has been approved for all patients.

Anyway, please find all the necessary information below to contact Dr. Spetzler and his staff below.

Best wishes for your son and your family.

God Bless,

Henk :ugeek:



There is no cost for patients outside the US.

Barbara Romley
Medical Secretary to
Dr Robert Spetzler
Barrow Neurosurgical Associates
2910 N. Third Ave
Phoenix, Arizona 85013
602-406-3489
602-406-4402 (fax)
Barbara.Romley@bnaneuro.net
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vandy
 
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Re: Anyone from NZ or Australia?

Postby Fan of Barrow » Mon Nov 15, 2010 6:09 pm

Welcome Rosan, sorry about your diagnosis. All I can suggest (from my experience) is to send your scans directly to Dr. Robert Spetzler (in Arizona) who specializes and is the most experienced surgeon in cavernomas. He and his team will promptly review your son's case for free, advising surgery or not based upon multiple factors. Then they will call you to discuss their recommendations. Many people on this forum/website have had resections by him.
His office will then give you a quote for surgery and a seperate quote for hospital fees, based upon cavernoma resection and a 5 day stay. We had to take out a line of credit and get help from family to pay for it. But for me, it was worth it knowing that I was in the best hands.
If that isn't an option, continue searching for sureons that specialize in vascular malformations in your area.
Good luck.
Linda.

Vandy-thanxs ;)
Diagnosed with 2 cm cavernoma in Left Parial Lobe after gross hemorrhage in June 2008 at 37 years old. Had it resected by Dr. Robert Spetzler at Barrow Neurological Institute in Phoenix Arizona June 18th, 2010.
My surgery story: (formerly "linda_mom of 2")

http://www.angiomacommunity.org/ikonboa ... =2977&s=dr. spetzler
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Re: Anyone from NZ or Australia?

Postby Rosan » Mon Nov 15, 2010 7:59 pm

Hi Henk and Linda

Thank you so much for responding to my post. It sounds like very good advice and I will discuss it with James today.

I read your surgery story Linda - thanks so much for posting it even when you were feeling lousy. It is so helpful to others like myself.

I will keep you posted about James. he is seeing a neurosurgeon here tomorrow but after that I think it would be good to send his MRI dvd and all the details to Dr Spetzler for his opinion. I would rather raise the money and know he is in good hands than risk having less expert care.

Rosie
Rosan
 
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Re: Anyone from NZ or Australia?

Postby kylee » Sat Apr 02, 2011 1:58 pm

Hi I just had surgery in Townsville Australia by a brilliant neurosurgeon. Hopefully your son is sorted now but if not I'd look up Dr Eric Guazzo.
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Re: Anyone from NZ or Australia?

Postby deeland » Sat Nov 03, 2018 6:50 am

Hi Rosan
NZ here, with partner diagnosed some years back. How did things go for your son?
Totally understand your position. Yet to have surgery. All so glacially slow, like a living nightmare.
deeland
 
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Re: Anyone from NZ or Australia?

Postby deeland » Sat Nov 03, 2018 6:52 am

kylee wrote:Hi I just had surgery in Townsville Australia by a brilliant neurosurgeon. Hopefully your son is sorted now but if not I'd look up Dr Eric Guazzo.

In NZ here. Thanks for the tip, just in case, eh.
deeland
 
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