Author Topic: Just in case  (Read 2824 times)

bethtretrault

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Just in case
« on: July 22, 2014, 12:46:19 pm »
I am struggling a bit (a lot) with how to find out from centers and MDs how many of each type of treatment they have done and the outcomes.  Do you just call them up, hope they will answer your questions and not use them if they won't? Is that how others have done the identification of what to do, where to go, and who to go to if/when the time comes? Maybe I should be posting this in post treatment not watch and wait.  Hmmmm.  Anyone else out there obsessively trying to prepare?
beth
12/2013 5mmx4mmx4mm left
tinnitus, w&w
5/2015 7mm-louder tinnitus, occasional dizziness
retro sigmoid 11/2015

Mickey

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Re: Just in case
« Reply #1 on: July 22, 2014, 03:39:30 pm »
I`ve been W+W over 7 years now and doing fine.... Get over to W+W boards for more info and stay very pro active info + health wise... Best wishes, Mickey

rodneyd

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Re: Just in case
« Reply #2 on: July 22, 2014, 04:08:17 pm »
Hi,

Have been on W & W for 9 months, last MRI showed no growth so am very happy about that.  Will be staying on W & W unless something drastic happens to my symptoms or the next MRI shows some excessive growth.

The AN society has a list of people willing to talk with you.  Check them out and see if they have any ideas.  There are also AN support groups (I just attended the quarterly meeting in Seattle on Sunday), so check and see if any of them are close enough for you to attend.  It is great place to meet people who have already been dealing with the decisions you face.

Try the internet, look at the medical centers and find out what departments they have (neurology) and then look at the doctors' background.  The prevailing wisdom is that the more operations they have done, the better care they can provide.  I think there is a lot to be said about that.  After all, this is brain surgery.

Try to find doctors that are qualified to operate on the lower skull area, not just the brain.

There are certain centers in the US that specialize in AN surgery, so I would check them out thoroughly. 

The internet is a wondrous place, if you can use it effectively.

Good luck to you, whatever you decide.

Rod
74year old male, 8.3x7.3x6.5 mm AN on 10-28-13.  MRI on 12-30-13 showed no growth.  Imbalance issues and mild tinnitus.  MRI on July 13, 2014 showed no growth.  Still on W & W and taking baby-aspirin regimen.  MRI in July, 2016 show slow growth (1.1 cm).  MRI on July 24, 2017 was 8.2 x 8.6 x 8 mm!