Author Topic: Newbie questions  (Read 7525 times)

Tisha

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Re: Newbie questions
« Reply #15 on: January 20, 2009, 12:04:13 pm »
HI Laura,

I thought I'd answer your question as to why I had CK vs. any other treatment.  My AN is 1.7 cm x 1.1 cm.  My symptoms were mild hearing distortion (my audiogram said it was still fine, but the nerve irriatation distorts it), and mild imbalance.

I decided very quickly that I would go with radiation for the better chance of saving my hearing and much higher chance of no facial palsy.  I didn't care if it was still in my ear, all sorts of squishy gross organs and such are all throughout my body anyway.  As long as it stopped growing, it doesn't bother me.  The thought of the other problems bothered me more.  That was my deciding factor.

From there, my research was mainly finding out what type of radiation.  Gammaknife only has 30% hearing preservation with CK and hypo-FSR of 75%+.   So, that took me to CK or hypo-FSR.  I went with CK because 1)  the machine is more accurate  and 2) the doctors were quick and responsive to my MRI's that I mailed and any follow-up questions.  (I went to Stanford and Dr. Chang/Dr. Soltys last week).

Everyone has to find their way with what they are comfortable with.  But this was my story...which has ended yet. 

Tisha
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

Dawn

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Re: Newbie questions
« Reply #16 on: January 21, 2009, 04:24:36 pm »
Hi All

I found it interesting about the radiation treatments....my doctor told me that he would not go the radiation route with me as I was young and he prefers radiation only if patient's were older.

I was also researching it on my own and was wondering if anyone had heard that
1. It can grow back
2. there is a chance that when it grows back it can become malignant
3. still some hearing loss and chance of facial nerve complications

I know many of you know a lot more than me on the subject and have gone thru it yourselves.  Any input helps with making an educated decision

thanks
Dawn
Diagnosed 12/08...4mm Left AN in IAC...Wait and Watch for now...Next MRI scheduled for 8/09 Doctors not sure if its AN, Lipoma or Hemangioma????

Also diagnosed with Chiari I Malformation - looking into options for that

mk

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Re: Newbie questions
« Reply #17 on: January 21, 2009, 07:29:44 pm »
Hi Dawn,

I know that many will chime in on this but here are some brief answers, at least from my point of view:

1. Yes, there is a chance of re-growth (or rather that the radiation will not work, so that the AN will not be controlled). There is also a chance of regrowth after surgery. We have seen both types of cases on this forum.

2. The cases of ANs becoming malignant are so few in the literature that they are not even worthwhile mentioning. I think 6 overall, with 3 being after radiation. The risk of secondary malignancy elsewhere may be more important. It is not clear if the risk of developing a malignancy elsewhere in the brain is higher than the general population, but it is always a chance. There is also a chance that something might go wrong with the anesthetic or a serious infection when having surgery. There are risks in everything.

3. Long term hearing loss can happen with radiation treatment (more so with GK rather than CK) and usually over the long term. The chance of facial nerve complications is usually estimated at 2-3%, whereas with surgery it can be as much as 30% or higher, depending on the expertise of the medical team etc - see again reported cases on this forum.

It is true that many doctors mention the age factor. And there is serious merit to this, as very long term data (say over 20 years) are not available for radiation. GK has been around since the 70s, but it was only used in elderly patients, so it was impossible to obtain reliable follow up over long periods of time. The age factor argument may also be reversed, in that many younger patients are dealing with young families, careers etc. and may not be able to afford the long recovery times required after surgery.

Marianna


GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

leapyrtwins

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Re: Newbie questions
« Reply #18 on: January 21, 2009, 11:35:07 pm »
There is also a chance of regrowth after surgery.

This is true.  Chances of regrowth after surgery are approximately 1-2%.

Docs do their best to remove ANs entirely during surgery, but even one little cell left behind can cause a "removed" AN to regrow.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

sgerrard

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Re: Newbie questions
« Reply #19 on: January 22, 2009, 12:02:12 am »
I know that many will chime in on this but here are some brief answers, at least from my point of view:

I'm not sure about more chiming in; I think you summed it very well. Now I will chime in. :)

I would add that the 1991 NIH Consensus Report on AN Treatment concluded that radiation was best reserved for the elderly and infirm. Although that report recommended revisiting the subject within 5 years, there has not been another since. I think many doctors still go by that consensus today, although stereotactic radiation treatment of ANs has come along way since then (that report pre-dates even the Pittsburgh studies). There are numerous articles providing a more updated view of "Radiosurgery Today", so to speak.

It is interesting to me that the answer to all three points is Yes, and it is so whether you are speaking of radiation or surgery. Number 1 has low chances in either case; number 2 is very unlikely in either case; and number 3 is an issue in either case.

The remaining question about treating younger patients is: what will happen to them in 50 years? The good news is that radiation oncologists and radiation physicists do have a lot of experience and data on radiation treatments and consequences in the more general case. Time and again, without fail, the trend established at 5, 10, 15, and 20 years serves as an excellent indicator of what to expect at 30, 40, and 50 years. There is no reason to think it will be any different with ANs. A person of 50 may well live another 40 years, while a 30 year old would live 60 more years - not such a great difference really. I think the age issue is fading away.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

fbarbera

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Re: Newbie questions
« Reply #20 on: January 22, 2009, 02:45:14 am »
Hi Laura,

Joining this conversation a little late here, but Marianna already pointed you to my story, which I've posted on my website below (in my sig line).  I elected to treat my 2.5 cm AN with Cyberknife after consulting with numerous neurosurgeons (surgeons and radiotherapists).  In the website, I describe my experience and research in detail, including the individual consultations I received and the reasons I chose CK over surgery and other treatment modes.  There's also a post-treatment section that describes the symptoms I've experienced since treatment.

Since I was 35 at the time of treatment, the possibility of later cancer was obviously an important concern for me.  My own conclusion is there's no basis for concern on that front -- but obviously that is a personal decision you need to make after your own research.   

Also, this post summarizes fairly comprehensively why I chose CK over the other alternatives:

http://anausa.org/forum/index.php?topic=7848.msg83734#msg83734

Good luck and please let us know if we can be of further assistance.

Francesco
2.6cm right-side AN
CK @ Stanford, August 22-24, 2007
Tumor Size Stable, Hearing Level Unchanged, Occasional Symptom Flair Ups, No Facial Issues, Doing Well
For my complete Acoustic Neuroma story:  www.myacoustic.org

Pooter

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Re: Newbie questions
« Reply #21 on: January 22, 2009, 08:21:00 pm »
Laura,

Ok, so I am WAY late coming into this thread, but the welcome is no less sincere.  You will find, or already have, the members of this forum are more than willing to help by sharing their own thought process.  I've already shared mine with you privately, so I won't bore you again.  ;)

I didn't read all of the responses in detail, so in case this is repeated, I'm sorry.  I would also look up the House Ear Institute in LA.  They will provide you with a free phone consultation if you send them a copy of your MRI.  The details are well documented here, or their website (http://www.hei.org.  Use the "Search" function on this website and search "house" or "hei".

Welcome to the forum again.  You've found the right place for advice.

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager