New - looking for advice

[Helping Mom]

Hi!  In January of this year, my mother was diagnosed with a AN after experiencing significant hearing loss in her right ear over a short period of time (Sept - Dec 2010). The tumor is about 9mm at this time.

I've done a lot of research, including reading may of your posts various stages of diagnosis and treatments.  After initial consult, we went to the Univ. of Cinci and spoke with Dr. Tew & his staff for a second opinion.  They were very helpful and provided a lot of information - a very good experience.  They suggested radiation treatment for my mother.  They recommended numerous small doses.  Dr. Tew's team consulted with the Brown Cancer Center (easier for us to access) and they have recommended one large dose.  Mom is still trying to understand which is best for her.  Any thoughts on this would be helpful.

Further, the doctors at Brown mentioned that short-term memory loss was a possible side effect of the radiation treatment.  I've tried to find more info on line about this to understand the risk, but I can't find anything.  I see headaches, dizziness, facial paralysis, chances of the tumor turning cancerous, and all the other challenges that are associated with an AN - but nothing about memory loss. 

Have any of you experience memory loss?  Was this discussed as a possible side effect during your consults?

Any info would be very helpful.  Thanks!

[CHD63]

Hi Helping Mom and welcome to this forum .....

Many of us have experienced short-term memory loss in varying degrees ..... not sure if there is any connection between it with surgery vs. radiation.  With any brain injury (caused by trauma of any kind, surgery, or radiation) comes brain healing.  During that period of time much of the brain's function is devoted to healing itself.  Apparently how this affects specific individuals is unique.  I am not a doctor, but have gathered much information on this forum, as well as other research.

To those of us with severe balance issues, memory becomes an ongoing problem because so much of our brain function is devoted to maintaining balance.  I find I have to stop walking if I am talking with someone in order to really comprehend fully what they are saying.  You know the old saying, "I cannot walk and chew gum at the same time!"   

..... and no, this was never discussed on any consults I had prior to surgery.

Best thoughts.  Clarice

[TJ]

Helping Mom

Not being a doctor I know that the doctors have to tell you all possible side effects.  I think the percentage of AN's turning cancerous from radiation  is extremely low.  I was told by my doctor that if you have the option on radiation you should opt for taking several smaller doses as it has a better chance of saving the hearing in that ear.  CyberKnife is usually done in 3-5 doses whereas GammaKife is usually done in 1 dose. 

In my case my AN was about the same as you mom's at 1CM and I had 5 treatments of CyberKinfe.  After each treatment I was able to drive, go to work, or anything else I wanted to do.  It did give me fatigue.  I have lost a small bit of hearing, and I do have some balance issues, not to severe.  As for memory loss, I think it is more accurate that I say it is harder to "focus" on what you are doing.

Hope this information helps.

TJ

[Jim Scott]

Helping Mom ~

I underwent retrosigmoid surgery to 'de-bulk' a 4.5 cm AN (and sever it's blood supply).  90 days later  (in a pre-planned procedure) I went through 26 FSR 'treatments' (totaling approximately 27 Gy of radiation).  My neurosurgeon and radiation oncologist felt that 'fractionated doses' of radiation were my best chance to (a) destroy the remaining tumor's DNA and, (b) avoid unpleasant side-effects.  I'm pleased to report that both goals were achieved.  My hearing in the affected ear was already gone prior to the surgery & radiation so, 'saving' my hearing was no longer an issue for me.   My balance is good, if not 'perfect' (I call it 'serviceable) and I suffered no ill effects - including short-term memory loss - from the fractionated radiation.  Subsequent MRI scans indicate the 'de-bulked' and irradiated tumor is experiencing necrosis.  I'm not a doctor and cannot make medical recommendations but I trust that my experience is helpful to you and your mother as you explore the best way to address her AN.  

Jim

[leapyrtwins]

Dr. Tew's team is a very good team.  Very experienced in AN treatment and very good at what they do.

Treating older patients with small ANs, like your mother's, is pretty routine these days.  Treating younger patients with small ANs, is also widely done. 

Gamma Knife is one dose.

You should check out the literature printed by the ANA (it's free and you'll find info on requesting it on the main web page).  I think you'll find it very helpful.

Best,

Jan

[Helping Mom]

Thank you all for sharing your experiences; the information provided is very helpful.  She still isn't certain which treatment she will choose.  It's hard to get her to talk much about it.  Maybe it's a mom thing. 

I'll keep you posted on her status and keep reading.  The info on the internet coupled with each of your personal experiences is very powerful and I am thankful that you are all willing to share in effort to help others. You are all very brave and wonderful. 

[leapyrtwins]

This year's symposium (they are held biannually) is in Cincinnati and it's hosted by Dr. Tew.

It might help your mom immensely to know (and see) that she's not alone on her AN Journey.  You should encourage her to attend - and even attend with her. 

You'll find info about the symposium on the main page of the ANA website.

Jan