Author Topic: New to sight and have a few questions regarding AN  (Read 5443 times)

DC22

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New to sight and have a few questions regarding AN
« on: September 27, 2014, 10:45:53 am »
New to the AN forum. I was diagnosed with AN in August, 2014 (50 yrs old). The size is 1.6 cm's (medium). Symptoms include: hearing loss to my right ear, Tinnitus, balance issues, headaches and fatigue. Will be seeing my specialist next week to discuss my concerns and look at options. I am sure I will get the answers from my specialist but im curious if surgery is recommended for a medium size tumor? My main concern is being more acceptable to facial nerve damage post surgery and a complete loss of hearing if surgery is delayed!

Thanks

CHD63

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Re: New to sight and have a few questions regarding AN
« Reply #1 on: September 27, 2014, 11:42:27 am »
Hi DC22 and welcome to this forum of caring, supportive, new friends .....

At 1.6 cm you may have the option to wait and watch, depending upon your past history and/or how rapidly your AN is growing.  At 1.6 cm you should have the options of either treatment by radiation or surgery.

Because they are relatively rare, the important thing with treating acoustic neuromas, is to get opinions from the most experienced physicians who have had vast experience treating specifically ANs, not just any brain tumors.

Depending upon the exact location/configuration of your AN, you may be eligible for surgical removal via middle fossa approach, which has the best chance of preserving hearing ..... although 20% of my hearing was preserved following a retrosigmoid approach. 

Many thoughts and prayers for answers and appropriate treatment.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

arizonajack

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Re: New to sight and have a few questions regarding AN
« Reply #2 on: September 27, 2014, 12:01:54 pm »
There are studies that show that surgery and radiation both can preserve hearing under certain circumstances. But there are no guarantees with either and you haven't said to what extent you've already lost hearing.

I've been on this site for a couple of years and I've learned the following (there are exceptions) based on my own experience and the experience of others:

ANs grow.
Hearing continues to deteriorate.
Watch and wait is often a bad idea.
Tinnitus never goes away.
Balance issues, headaches and fatigue can all be adequately resolved over time.
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

terisandler

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Re: New to sight and have a few questions regarding AN
« Reply #3 on: September 27, 2014, 07:33:28 pm »
I just thought I would chime in for a minute.  I had CK in May, 2013.  Most of the hearing in my AN ear was gone prior to dx and will not be restored.  I also had vestibular issues prior to dx and they seemed to worsen significantly approximately six months post treatment.  These issues seem to resolve themselves after another 5-6 months and I now experience balance difficulties only when I am particularly tired.  I am able to walk long distances with my dog and no longer feel unsteady on uneven ground.  My follow up MRIs have shown that my AN is stable and even showing signs of necrosis.  I am happy!   ;D
3/25/13- dx 18x11x14 mm AN, hearing loss in right ear x 5+ years, 5 sessions of CK completed May 2013, now a "post toastie".  Follow up MRI 4/14/14 - 15x19x11 mm. Stable with some signs of necrosis.
 Yippee!

Kate62

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Re: New to sight and have a few questions regarding AN
« Reply #4 on: October 04, 2014, 08:40:42 pm »
Teri, I was just diagnosed and still researching all my treatment options. I am curious about your Cyber Knife experience. How large was your tumor?  Where did you go for your CK?  You mention balance problems.  Were you able to drive during that time? Were you dizzy only when you were trying to walk or did it stop when you were seated in your car and you were able to drive?  Hope that makes sense -LOL - I am just wondering if I am going to be able to drive back and forth to work.  Thanks for your help!  Kate

john1455

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Re: New to sight and have a few questions regarding AN
« Reply #5 on: October 06, 2014, 01:31:05 am »
I had CK at Stanford in March 2014 and I feel basically the same postop as I did preop. The only new symptom I developed was slight vertigo. My AN was 19mm (1.9 cm) and was cystic and I drove to and from all my sessions (40 miles one way) without any problems. When I am stationary, I feel perfectly normal but when I walk, I have disequilibrium (balance issues). On a scale of 1 to 10, it is about a 3 (10 being the worse). After CK I would say my balance got a hair worse, maybe a 4, but it varies from day to day. My new found dizziness is also around a 2 or 3. I hope this information helps but be aware that we are all unique individuals and I feel fortunate that my CK experience impacted me minimally. My right hearing was about 75% gone prior to CK and has not worsen but then, it has only been 7 months postop. My tinnitus, however, did get worse (louder) but like my balance, it is not constant and varies from day to day. With regards to driving, if I turn my head quickly, I experience mild dizziness; when I have to turn my head to look backwards as when going in reverse, I experience slight dizziness. When I ride my bicycle, I feel perfectly normal since I am actually stationary on my bike seat.

At 7 months post CK, I am glad I NEVER even considered surgery as an option. I know I would not have had so few after effects compared to surgery. To me, the quality of life was at the top of my list and after reading about all the problems surgical patients had to suffer through, I knew that was not for me. My CK recovery period was zero. The best advice anyone can give you is, regardless of what treatment you choose, make sure your doctor has a lot of experience and does many cases per year. You find this out by asking your physician directly and he/she should have no hesitation in answering.
« Last Edit: October 06, 2014, 01:36:33 am by john1455 »
Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs

Kate62

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Re: New to sight and have a few questions regarding AN
« Reply #6 on: October 06, 2014, 05:52:48 pm »
John, thank you for your very helpful answer. I am still trying to decide between Cyber Knife and Gamma Knife. I am also waiting to see what my insurance - CIGNA -can do for me. I do realize each one of us will have a different outcome no matter what we do. I am going to ask my doctors lots of questions. My list of questions is getting longer and longer LOL.  Thanks!  Kate

john1455

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Re: New to sight and have a few questions regarding AN
« Reply #7 on: October 06, 2014, 07:46:52 pm »
Kate, here are some videos comparing CyberKnife and Gamma Knife that you may find helpful:

https://www.youtube.com/watch?v=STXDdH0KC7I&list=PLyJxAEO3EU-Sy-g7fb74A-U6ALK6cz7Wj
https://www.youtube.com/watch?v=Xx4svXp8bYQ

There is a wealth of information on You Tube; just type in Cyberknife, Gamma Knife, and/or radiosurgery and you should be get a ton of information.

FYI, CyberKnife was born at Stanford and is the best CyberKnife facility, IMHO, and does more cases than anyone; Gamma Knife was introduced at the University of Pittsburgh Medical Center and is the premier facility for that modality. While you are waiting, do as much internet research as possible and this will undoubtedly shorten you questions list (but do ask them of your doctors and compare their answers to what you have learned online). The experiences of posters on this forum will also help guide you in the decision making process. Good luck!
Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs

terisandler

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Re: New to sight and have a few questions regarding AN
« Reply #8 on: October 07, 2014, 05:21:03 pm »
Teri, I was just diagnosed and still researching all my treatment options. I am curious about your Cyber Knife experience. How large was your tumor?  Where did you go for your CK?  You mention balance problems.  Were you able to drive during that time? Were you dizzy only when you were trying to walk or did it stop when you were seated in your car and you were able to drive?  Hope that makes sense -LOL - I am just wondering if I am going to be able to drive back and forth to work.  Thanks for your help!  Kate


My AN measured about 18 mm x 11 mm x 14 mm.  I had CK at Parkview Medical Center in Fort Wayne, IN.  I never stopped driving.  Mostly felt light headed changing positions.  My car felt like it was still moving when I parked it.  I have a very part time job but the pace is picking up this fall and I am more fatigued than before.  Fatigue seems to bring on some symptoms but they are very manageable.  So far.  :D
3/25/13- dx 18x11x14 mm AN, hearing loss in right ear x 5+ years, 5 sessions of CK completed May 2013, now a "post toastie".  Follow up MRI 4/14/14 - 15x19x11 mm. Stable with some signs of necrosis.
 Yippee!