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Acoustic Neuroma, Meningingioma or Hemi-facial Spasm patients - South Africa ?

Hi Everyone in this group .. I hope you are as well as you can be and coping.  

I'm looking for patients with similar disorders from whom I can seek guidance and advise.  I live in South Africa and would like to find someone with similar illness in my own country with advise about treatment & radiation therapy.  I was diagnosed in April 2006 with a Right side Acoustic Neuroma brain tumour, size 8 x 5 mm, (also known as Vestibular Schwannoma), plus a Right frontal Meningioma brain tumour, size 10 x 9mm.

I've also been suffering from Hemi-Facial Spasm in Left side of face since 2004, supposedly a post symptom of a stroke I had in 1992 with infarct in Mid Brain. Even stranger, after collapsing in April 2006 with a diagnosed "TIA", ( at which time the MRI taken diagnosed both the AN & Meningioma).. ever since that day I have had pulsative tinnitus in the Left ear ( Hemi-Facial Spasim side) ... however, the tinnitus in the Right Ear ( Acoustic Neuroma side) is best described as "white" static noise, which gradiually got worse over the past couple of years along with loss of hearing, enough to drive me nuts at times

Anyway, having obtained a 2nd opinion after diagnosis in April 2006, I was told surgery would not be a good option as the Acoustic Neuroma brain tumour is growing on BOTH the 7th & 8th cranial nerves and if operated, by cutting the AN tumour off the 7th (facial) nerve & 8th (audio) nerve would result in irreversable damage which would leave me stone deaf in R ear and total face paralysis R side of face, so I've been a watch & wait patient since.  

My last MRI in 2007 showed minimal change in the size of Right AN (8 x 5 mm) & Right frontal lobe Meningioma (10 x 9mm).  I'm due to have another MRI 18 December 2008 next week and rather anxious as to the outcome as my symptoms have worsened over the past year .. loss of hearing, dizziness, unbalanced, severe headaches, tinnitus etc.

I've extensively researched Radio Therapy for treatment of Acoustic Neuroma brain tumours on the internet and was highly interested to learn of Dr. Lederman's fractionated stereotactic brain radiosurgery method at New York Radiation centre which was reported to be very successful in the treatment of AN's with high ratio of hearing & facial nerve preservation... I also researched and been in contact with John Hopkins Hospital in Maryland USA also had a high success rate for AN treatment with similar FSR method.

Wishing you and your families well over the festive season.
Take Care.

Ayeshe
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Avatar universal
Hi Petrus. I was diagnosed with AN 3 years ago. Had stereotactic radiotherapy and going for annual MRI's. The neuroma has not grown since the treatment. I am 47 now and just find my dizziness gets really bad at times - especially when I drive or walk long distances. Do you experience the same? What products did you mention and what are they for? Regards, Bianca.
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Avatar universal
COMMUNITY LEADER
I hope you get a response to this older post...

I happen to know someone who had ANs on both side - he had them both removed - one recurred, and he had to have another removal. He used a cochlear implant to hear.

There are options - my best wishes to  you all.
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Avatar universal
Hi there.

My name is Petrus. I stay in Bloemfontein.

I have been diagnosed also with a AN in 2013. I lost my hearing in my left ear. My AN was 8x9mm and was treated at Rondebosch Oncology clinic on 07/07/2013. The reason why I am responding is to inform you about products that I am currently using to regain strength. If you need further info please contact me. I connot advertise the product openly, but would love to tell you more.

Regards.
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Avatar universal
It's hard psychologically to accept the afflictions that comes with having brain tumours.

I agree with you that there is HOPE .. it's the only thing keeping me going, plus all my wonderful family and friends who have supported me throughout this dreadful ordeal.

I would like to learn more of your brain tumour.  Thank you for your inspirational message.

To all the other people out there in the world who have similar brain tumours , my heart goes out to you all and I wish you all encouragement, endurance and above all, HOPE!
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Avatar universal
I just want u to know that there is hope. I've had a brain tumor for over 10 years..God is able there were times I couldn't speak and the only words I could say were "Thank You Jesus"
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