Author Topic: Advice  (Read 2405 times)

Nicostroebel

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Advice
« on: June 12, 2016, 02:02:31 am »
Hello All,

I'm really glad I found this forum,  I live in South Africa although we have an advanced medical industry here it is still lacking in areas and one of those areas is the treatment of AN and finding a experienced neurosurgeon here who has dealt with more than 100 AN cases  or even finding relevant information on treatments available in South Africa is very hard.

I've been suffering from ringing in my ears for about 6 years and visited a few specialist to help pin point the cause and was told it was tinnitus and there was not much that could be done about it, so I accepted this and continuted with my life. About 6 months ago the ringing got louder and I was having a terrible time concentrating of my daily activities, I made an appointment with a ENT who after examing me said he feels I'm to young to have tinnitus and he would expect to tinnitus in someone much older, I turned 39 this year.

He scheduled me for an MRI that same day, I spent about 40 minutes at the MRI facility and returned to his room waiting for the result. While I was using in his consulting room to see him, the MRI department called me on my mibile asking that a return for a second scan, as they wanted to verify something. At this point I knew something was wrong and eventually i was told it was a AN about 3mm in size.

The only thing I could hear was the word tumour while the doctor tried to explain the cause and the rarity of it, I've never heard of a acoustic neuroma before. His advice was surgery and that radiotherapy had poor results in effective treatment of a AN.
I asked him to write down the the type of tumour it was and left his offices to research for myself what a AN meant and what treatment was available to me.

I believe that the gamma knife or cyber knife technology's are very viable in my case since the AN is so small, but none of these technologies are available to me here in South Africa and if I wanted to get this treatment I would need to travel aboard for it but this is not an option for me right now as the cost of this is very high. I'm now in the wait and see stage, with a MRI scheduled for 6 month intervals to see if the AN is growing.

Nicholas


Sheba

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Re: Advice
« Reply #1 on: June 12, 2016, 11:51:46 am »

Hi Nicholas - Sorry to hear your diagnosis.  My mother-in-law lives in Capetown - SA is such a beautiful country. 

I got AN diagnosis in April (1.4cm).  I joined ANA as a member, and I have found the many webinars posted in the members-only section to be really helpful, and the newsletters are very well written too, with a good medical article as headline in each issue.

At 3mm, you should have a lot of time to research your options.  Of course keep up with the MRIs because ANs can have growth spurts / not follow the "1-2mm / year" average. 

At 39 - some would say you are too young for radiation, that there is not enough data yet on long term outcomes.  Others would say it's an excellent option, seems like the % of people choosing radiation over surgery is steadily increasing.  You'd need doctors' opinions on the specifics for your case as to what to expect.  Different docs may recommend different things based on their own areas of expertise.   

You will see, AN patients also have their own point of view on radiation, surgery, or observation - for small & medium ones, the patient has to make the decision, which is really hard !!!  I'm 54 and will be having surgery not radiation. 

I googled and saw this place in Joburg - looks promising?:
http://www.entinstitute.co.za/A_aboutusBio.asp

Also here is a doctor in Los Angeles who is from Joburg originally - he specializes in neuroradiology: 
http://www.micsc.com/bradley.html

maybe you can email Dr. Bradley, and he may have insights on what's happening in SA, for AN treatment.

Good luck!

Sheba
Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.

Nicostroebel

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Re: Advice
« Reply #2 on: June 21, 2016, 12:02:04 pm »
Hi All,

Sheba, thank you for your advice and the links. I've met with a few surgeon's over the last few days, some advise wait and see, some radiotherapy and only one advised surgery. I've chosen to go with radiotherapy on a machine called the Novalis Tx, which I'm told is the same tech as gamma knife? Not sure. There are a few other linear accelerator machines in South Africa but I'm told the Novalis Tx is very accurate and uses a shaped beam which is better in dosing lesions.

I'm heading down to Cape Town to under go what they call 1 fraction 1 treatment only next week.

All the best

 


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