A/N has Grown a lot after CK 2 yrs ago

[bjhk]

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

[mwatto]

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.

[bjhk]

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

[bjhk]

I see many videos in webinar but none mention Dr Chang

what is the date of his webinar?
thanks

[mwatto]

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

[bjhk]

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

[mwatto]

I will try and find the webinar link its Dr Chang at Stanfords talk.

[mwatto]

Its this one:  https://www.anausa.org/members-portal/webinar-library/796-cyberknife-radiosurgery-for-acoustic-neuromas

[bri-82]

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.

[bjhk]

I see you have had 2 surgeries, gamma, and ck!

which one was successful?

[bri-82]

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

[mwatto]

I had two cystic components- which disappeared 4 years ago with CK.