ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: bjhk on May 07, 2023, 10:27:30 am
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I had another MRI April 27
The a/n has grown a lot and Dr now wants me to see a neurosurgeon for a consult
He said no more radiation
Originally he told me I was too old for surgery
Balance is terrible, I now have to use a cane in the apartment
Regular cane, someone said a quad can might be better
Outside apt use walker and scooter
Has anyone else had recurring symptoms ? ALL MRIs were good until this one
I also have facial spasms, neurologist says Botox every 6 months wil help
BUT cousin started facial spasms 2 yrs ago and she doesn't have ANA
she thinks it must be hereditary
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The Dr Chang video in our webinar library has the view that the first 5 years after radiation are about response. Certainly the first three years pseudoprogression can cause swelling. I wonder if its worth getting a second opinion? Also consider things such as sulforaphane, low dose aspirin or bromelain - basically keeping inflammation down. A lot on AN growth and inflammation. Even stress can promote inflammation and growth. There are also new trials. I have read metformin may help and honokial. I also take full spectrum CBD and I have tried LDN.
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Thanks
I have used baby aspirin for years
Webinar is not allowing me to enter library
I says account not found, yet there is an account listed
Who do I contact about this/
I started more PT today
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I see many videos in webinar but none mention Dr Chang
what is the date of his webinar?
thanks
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Hi Dr Changs video is defintely there its under radiation. Contact the admin- its the most informative video I have ever watched on AN and I am in Australia. I had CK 4 years ago. Paul Wellen a memebr here was told failed radiation but it was in fact pseudoprogression. He chose to wait and monitor and it shrank. Just wanting you not to stress- I have been there - but maybe get another professional opinion. I will try find the link to Changs video
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How do I contact the administrator?
Today it isn't recognizing my id/and pw
very strange; have used this site for for years
And no way to find Dr Chang's webinar; do you have a link?
thanks
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I will try and find the webinar link its Dr Chang at Stanfords talk.
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Its this one: https://www.anausa.org/members-portal/webinar-library/796-cyberknife-radiosurgery-for-acoustic-neuromas
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This might be it if you are still unable to login to ANA: https://www.youtube.com/watch?v=iPanfQ3E9xo
Also note that Dr. Steven Chang is apparently on YouTube.
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I see you have had 2 surgeries, gamma, and ck!
which one was successful?
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In my case, I developed a cystic component that grew outwards from the solid tumor years after the first surgery and GK. I would say that in terms of the solid tumor the first surgery followed by GK was fairly favorable in that the solid component hasn't really grown much; it may have shrunk a little. But I did develop a cystic component that has become symptomatic which has been the basis for further treatment since then. I had CK about 15 months ago and the outcome of that is yet to be determined (though I am still symptomatic). The problem IMHO with GK/CK is that it can take a long time.
~BM
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I had two cystic components- which disappeared 4 years ago with CK.
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I am not on here much any more but noticed my name in a thread.
Its been over 13 Years since CK.
My tumour started at 10x5x5mm
At 6 months got bigger 13x6x7mm if my memory serves me correctly
at 2 and 3 years it shrank a little
at 4.5 years it had grown to 16x8x8 and I was told radiation had failed by my Australian Specialists.
I then spoke to my treating surgeon Dr Muacevic in Germany at the European Cyberknife Centre and he said it was still too early to tell and we should continue to watch and wait.
At 7 years it had shrunk to 14x7x7
My last MRI was at 12 years and it was down to 12 x 6 x 5
I still have hearing in my AN Ear but need a hearing aid.
Low frequencies are completely normal, but I am missing some mid range and most of my high frequencies
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Paul,
Thank you for your story. It gives a person just starting down the path (4 months post) confidence.
Dan