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[cwilson]

Hello Friends,

I went to the Dr. CY Joseph Chang out of Houston. I like him.  This is my second Dr. and I feel good with him.  I found my AN because I had hearing loss in my left hear, but my AN is on left side.  Dr. Chang start me on steriod treatments to see if I can get my hearing back in my left hear.  Since we have been going the treatment, my hearing has been improving.  I said  this because the hearing lost in my left ear does not have anything to do with AN on my rigth side.  This is how they caught it so early.  Dr. Chang will do another MRI in December to see if it is still there or not.  If it is still there, I'm leaning toward radiosurgery.  I'm eating right and taking care of my body and I really feel good. Can anybody give me information on this issue?  I call you my friends because you know what I'm going through.

C-Wilson

[BeckyB]

I was going to go with surgery and then changed my mind.  I looked at GK and FSR.  I also looked at CK, which sounds good, but did not know where was best to go for treatments.  Surgery, for me, would have meant 100% loss of hearing in the affected ear.  Radiation gives me the chance of retaining my hearing.  With radiation or surgery, there is always a chance of regrowth.  I had to make a choice so I went with (FSR) radiation because I wanted to keep what hearing I had.  Only time will tell what the outcome will be.  Hopefully more information will come out about CK (doctors/locations) for those who need to make a decision.

Lots of luck

[sgerrard]

For C-Wilson, some links:

U. of Pittsburg, on radiation and comparisons to surgery:
   http://www.acousticneuroma.neurosurgery.pitt.edu/index.html

House Clinic, on surgery, with some comparisions to radiation:
   http://www.houseearclinic.com/pro_acousticneuroma.htm

CyberKnife at Seton Hospital in Austin, TX:
   http://www.seton.net/medical_services_and_programs/neurosciences/brain_and_spine_center/cyberknife__stereotactic_radio_surgery/

GammaKnife in Houston, TX:
   http://www.westhoustongamma.com/

AN Surgery at Baylor College of Medicine (nice set of 8 pics showing the steps of a trans-lab surgery):
   http://www.bcm.edu/oto/cfbd/ansurgbw.html#

And for something to do if you are watching and waiting:
   http://www.youtube.com/

Steve

[sgerrard]

For Bruce and Sam, some comments on House vs. Radiation...

The stats at House on low long term regrowth are for translab surgeries, where the hearing nerve is removed as well. It makes sense to me that this would give the lowest rate of regrowth. For middle fossa or retro-sig, when an effort is made to preserve the hearing nerve, those same long term regrowth rates don't apply.

Although neither surgery or radiation can guarantee preservation of hearing, both have some good results for smaller tumors. From the posts by those with SSD, it is clear to me that even a little hearing on the AN side is worth trying to preserve, since it can give some stereo orientation information, even if it is not good enough for word recognition. I think it is worth it, even if it means accepting a somewhat higher chance of long term regrowth, since the chance of that is still pretty small.

When the probable outcome is a tie between surgery and radiation, I have to lean towards radiation because it less sudden trauma to go through and less invasive.

Steve

[leapyrtwins]

Steve -

it's true that radiation is less invasive, but one of the reasons I chose surgery is that I wanted to know up front (as in postop) what my side-effects would be so I could deal with them and get on with my life.  The way I understand it, with radiation it can take between 6 to 18 months for side-effects to even appear.  Is this correct? or is it a misunderstanding on my part?

Thanks,

Jan

[sgerrard]

Jan, I think it is true that the results of radiation generally unfold over a period that can be 6 months to 2 years. I agree, that is a drawback of radiation. To me it is a question of balancing how soon you find out, against what you find out. It seems to me that radiation has a better shot at preserving hearing overall, even if it does take some time to see what happens in your own case.

[ppearl214]

Jan

I have to concur with Bruce....

In choosing my radiation treatment, I knew in advance (based on my research here, speaking to other radio-patients and what my dr's noted to me) the risks involved..... yes, things may crop up 3 mos, 6 mos or further down the road for radio-patients but based on advance research... if something did crop up, it didn't throw me off guard as I knew that these things could occur.

For me... I think the most difficult part about radio-treatment is the waiting game post-treatment.  I commend all those that had radio-treatment for their mental strength to hang tough during the necrosis (tumor death) process as it takes a strong will and inner strength to go through the wait.

I commend you for being at peace with your choice... as we note here all the time... have faith in your choice, never look back, never question it... but most of all, know that we are cheering you on and will be here with hugs and support to help you through your recovery. Please have someone keep us updated post-treatment.... we truly are cheering you on.

Be well... and hang tough!
Phyl

[leapyrtwins]

Phyl, Bruce & Steve -

I am totally at peace with my choice and have no doubts I made the right decision for me.  I have been very fortunate to only have minor side-effects and my original question to Steve was just that - a question.  I am not second-guessing my decision to have surgery.  I personally would have not been comfortable with radiation or with watching and waiting, but that doesn't mean those options are not right for others.  As I have stressed numerous times in other posts on this forum, personal choice is key in treatment. 

Thanks for your responses,

Jan

[linnilue]

I would like to chime in here.  As most of you know I had radiosurgery(linac) almost 3 years ago.  I am one of the very rare patients who has experienced some really difficult side effects.  That being said,  knowing what I know today and what I know and have experienced firsthand , I would still never choose surgery.  The longterm and very life altering side effects when tumors are difficult to remove or simply because "things just happen"  in the OR gives way to a chain of events that can be difficult for both patient and family.  Beleive me, I would love to have this tumor out of my head but I'd rather have it in there than have it removed.  I thought the side effects that I had were bad but when I read about totalt hearing loss and facial nerve palsy and eyes that have to be weighted down, I want to cry for these people and I don't feel sorry for myself even though my path has been a diffcult and frustrating one, but I am doing much better and in fact much happier, even though it has taken almost 3 years to get here.  I wish you the best. 

[susier]

C-Wilson,
I see that you are going to a Dr Chang in Houston.  I too have a very small 2mm AN and am seeking treatment in the Houston area.  Where is he located?

[jtd71465]

Bruce-

I'm confused reading the post...to whom did you respond to with the below post?  In my opinion; you should try and give equal positive air time to all opions available to the people who post on this site. 


"However, the idea that radio-treatment has protracted side effects, especially when it comes to hearing, and that microsurgery does not is simply not true. That is the point I was addressing, not your personal choice of treatment. Since many newbies and lurkers read these message boards, it is important that information be as accurate as possible."