Recent Posts

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31
Michele, thank you for the article, you always post interesting article.  Though I will admit this was a little difficult to completely understand the outcome.

I was 62 when I decided on CK for my tumor.  When I had my treatment I was under the belief that facial nerve damage was very low approaching zero.  Some of the recent webinars states this is a little higher.  I had no balance issues, however hearing loss and tinnitus we present.  I put together a matrix of the information gathered and continue to update it.  If you want this reach out to me (Dan4att@gmail.com).

I am happy with the decision I made for me.  I am not saying it is right for everyone, we all need to do what is best for us.  ANs are more frustrating then other medical issues as it is not as easy to make a decision. 

Good Luck on your decision journey.

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Hello Laloo, Like you I had hearing loss, no balance issue but tinnitus.  I was older and had translab recommended.  Like you I did research. I put together a matrix of the information to help me decide.  If you want that please reach out to me at Dan4att@gmail.com and I will share.  I am not a doctor but gather information and put it together in a form that helped me.  In my research I spoke with many doctors at leading institutes.  The best single advice I received was "when you make your decision do not second guess yourself but focus and working towards the best outcome."

As you can see I went CK and have not looked back.  We each need to make the decision that is right for us.

Good luck on your decision journey.
33
Radiation / Radiosurgery / Re: My AN Story 2015 Sydney to Stanford CK
« Last post by SP on August 06, 2025, 04:14:10 pm »
Thanks so much Michele & Dan  :)

PS my treatment was fractionated over 3 days too.

be well

Stella
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Eye Issues / Re: Hoping to get a Scleral Lens...
« Last post by KathleenPollard on August 06, 2025, 05:14:59 am »
Jill Marie - Thank you so much.  This was really helpful. Kathleen
35
Hi Stella! Just wanted to say hi and so glad things are still going well with you! I am also in a good place. My nerve pain seems to have resolved thank goodness!
36
Radiation / Radiosurgery / Re: Considering Radiation instead of surgery at 30 years old
« Last post by SP on August 05, 2025, 09:42:29 pm »
I had Cyberknife @ for a large Acoustic Neuroma in 2015. I was also recommended a Translab surgery at the time and like you was very concerned about the side effects of surgery. At the time I had perfect hearing & balance & surgery was going to mean definite single sided deafness on the left. After many discussions (via email) with Dr Chang I decided on Stanford for CK and have never looked back. They are an awesome team.

I wish you all the best in navigating this tricky decision. Be well.

Stella
37
mwatto:  My surgery was 7.5 hours long.   They told me 7 hours but I am guessing the extra half hour was because they actually lost a needle in my head for a bit and had to get an X-ray done during the surgery to locate it.   I was never told this bit of information by my surgeon, but that's the upside of the MyChart app.   It lists literally everything.  I was not upset that it was lost, because it's not like they didn't realize it was missing, I mean things happen, I am just glad that they kept track of everything and realized it was missing and immediately got the equipment in there to locate and remove it.  And I would be lying if I said a 7 hour surgery on my head wasn't scary.   There was a part of me that was worried I wouldn't wake up or I would wake up somehow damaged.   But in the end I knew it was the best choice for me.  I wasn't so sure about that when I woke up violently ill, the first two days are absolutely awful, but after the second day it wasn't so bad and I could tell things were going to be better, and I made the right decision for me.   I had gone to two different surgeons for opinions, one of them did suggest cyberknife, but I was more afraid of that than surgery because I have two friends in the medical field that told me multiple times that I didn't want anything to do with radiation of any kind unless it was a last resort. 
38
Yes I often wish I had been braver at the time and had the surgery -my radiation specialist told me that in my case be about 14 hours and very risky re the location. So I had the CK as he said I was an ideal candidate. However I saw a neurosurgeon here a few years ago and he said that was simply not true. That the op would have been about 4 hours and relatively easy to do. I guess I was so traumatised I just went with the easier option. My mum had recently died after a heart op and that didnt help.
39
I have no experience with radiation and I'm not young, I am 57 and just had the translab surgery 3 months ago on May 13th.   Before surgery I had really bad balance and couldn't run at all.   Now just shy of 3 months later I am great, and training for a 5k.  The surgeons have to tell you worst case scenario, but I am living proof that there are very positive results from the surgery too.   Everybody's risk level is different and I feel that if you are in relatively good health and active your recovery would go well.  I guess what I am saying is don't let the worst case scenario risk discourage you too much if you are currently in good health otherwise.   Now I do still have significant hearing loss in that ear, but no matter which treatment you choose the hearing loss is most likely permanent.  Also I think it is a good idea to do something before there are any other major symptoms.  Sometimes those symptoms are from irreversible damage. 
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By the way, I am not exactly young either.   I just realized that I never actually shared that information.  But I am 57.  I have just always been on the healthy side other than the tumor.   So getting back to running again is a bit more exciting to me than it probably would be to a 20 year old.   And the recovery time has been much quicker than I expected based on what I was told.
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