help in knowing what treatment option

[cdadams]

I am new here.  My doctor in Atlanta recommended I use this site to educate myself a little better on AN.  I am 43 years old and otherwise good health.  My tumor recently measured about 1 cm.  The biggest annoyance that the tumor has caused is the hearing loss in my left ear.  At times the noises in my head and the lightheadedness get frustrating, but I can deal with them.  I have NO idea which treatment route to take.  The doctor recommended surgical removal, but that would take away my remaining hearing.  I thought radiation sounded like a good idea, but didn't seem to be the dr.'s choice.  WHY??  So, at this point, I'm praying for wisdom (as well as healing.)..which is kind of at the "wait and watch".  Ultimately at this point, the dr. is leaving it up to me to get back to him with my decision.
Does anybody have any thoughts or recommendations they could give me?

[nanramone]

Hi - I was afraid of radiation in the beginning, but ultimately chose Gamma Knife for treatment. I read a lot, and it seems to be the growing trend to treat small to medium sized tumors with radiation, when appropriate.

I saw your other post - radiating a tumor is not "messing with it"! It is a perfectly valid method of treatment.

I would recommend a second opinion. Prior to making my decision, my records were reviewed by two surgeons who both recommended radiation in my case.

Keep up the research -

Nancy

[moe]

Welcome
Definitely get a couple of opinions. Your tumor is still small. No need to rush. One doctor may recommend what he or she does most frequently. Someone had said if he doesn't recommend you get a second opinion, then he's probably not the right doctor!


Gamma Knife and Cyber Knife are both good options. If the tumor is pressing against the brainstem, then surgery would be the way to go.
People who have had Gamma Knife have reported an easy treatment, with easy recovery, and shrinkage of the tumor.
Good luck with your research, and we are here to bounce off your thoughts, ideas.
Maureen

[Jim Scott]

cdadams ~

Hi, and welcome.  I have to concur with the previous posters that you should seriously consider getting a second opinion from another doctor that treats acoustic neuromas.  Although surgery is a common form of addressing an acoustic neuroma, radiation is also a very viable treatment.  Thousands of AN patients undergo this procedure every year, usually with much success.  Many of those are regular contributors to these forums.  Only a trained, licensed physician can make credible suggestions on your treatment but observation (via semi-annual MRI scans) may be one way to go, for now.  Because your AN is small and your symptoms are not severe, you shouldn't be too hasty in coming to a decision.  Above all, don't allow any doctor to 'pressure' you into a quick decision and of course, send for the ANA booklets by clicking here and filling out the form: http://www.anausa.org/sc/apps/forms/forms.cgi.   Thanks for posting!

Jim

[cdadams]

Thanks so much to you all for all of your kind and thoughtful advice and words of wisdom. 

Just to be clear... am I correct in my recollection in that surgical removal would take away any remaining hearing that I have in the AN ear?
Also, what is the chances of scar tissue forming from either radiation or surgical removal.

As this is all new to me, I'm sure I may posting more questions in the near future. 

[Jim Scott]

Just to be clear... am I correct in my recollection in that surgical removal would take away any remaining hearing that I have in the AN ear?

That will depend on the type of surgery you have.  With the Translabyrinthine('Translab') approach the hearing nerve is cut and your hearing is permanently lost in that ear.  The other 2 surgical approaches - Middle Fossa and Retrosigmoid - have a chance of retaining hearing but the odds are relatively low...approximately 20-40% and, of course, there are no guarantees. 

Also, what is the chances of scar tissue forming from either radiation or surgical removal.

Some scar tissue will eventually form following surgery but this is not a problem.  I underwent a partial resection of my large AN (4.5 cm) followed by radiation 3 months later (planned) and had no problems at all.

As this is all new to me, I'm sure I may posting more questions in the near future.

Please feel free to do so, that's why we're here. 

Jim

[cindyj]

Hello and welcome to the site!  You've been give great advice/thoughts already, but I wanted to welcome you and let you know that I live in the Atl area - north of Atl in Forsyth County.  I am going to send you my contact info in a PM (private message).  Please feel free to call me any time.  We will be having our next Atl Support Group meeting in mid to late September - would love to have you join us.  As Jim suggested, the ANA office can send you very helpful information (their office is actually right here in Forsyth County also.).

Yes, the decision process is tough - it took me 6 months to make up my mind - many others take much longer than that.  You certainly have options and time is on your side.  Take a deep breath and let us know how we can help you

Cindy

[leapyrtwins]

cd -

definitely contact the ANA for their informational brochures - they're free and you'll find them very helpful.

AN treatment is pretty much a personal choice based on the size and location of the tumor.  From the size of yours, both surgery and radiation should be options for you.

I was offered both options and ultimately chose surgery, but others choose radiation and find it's the right choice for them.

As Jim said, whether you lose your hearing or not from AN surgery pretty much depends on the surgical approach.  It can also depend on what the doctors find when they "open" your head - MRIs only show so much.  I chose retrosigmoid in the hopes of saving what hearing I had left in my AN ear, but my tumor was wrapped around my hearing nerve.  In order to completely remove the tumor, my docs decided to "sacrifice" the hearing nerve.  My neurologist and I had talked about this possibility prior to the surgery and he knew I'd be okay with the decision.

There are options available to those of us who end up SSD (single-sided deaf) - like the BAHA (bone anchored hearing aid), the TransEar, or just learning to adapt to hearing out of one ear.  Once again, it's a personal choice.  I have a BAHA and love it - but it's not everyone's choice.

Just keep in mind that there is life after an AN.

Best,

Jan

[FlyersFan68]

Only you know the answer to this. You are likely a good candidate for all treatments. My advice at this stage is to just take your time, research all the options and their complications and most of all speak to as many people as possible.

[cdadams]

Okay... I really appreciate everyone's thoughts on this....I'm still studying my options.  I am going to get a second opinion.  It's hard to decide where to go b/c I have not decided on the treatment route.  But, how do I know how to find the best doctor/facility.   A friend of mine has offered me a buddy pass to go anywhere in the US that I'd like.  So, any ideas on how to locate the best dr. for my situation.  Thanks!

[Jim Scott]

cdadams ~

I doubt anyone can offer you the name of the 'best' doctor/neurosurgeon/radiation oncologist for you, but there are excellent doctors with AN experience all around the country (U.S.) and our members will be glad to share the names of these physicians with you.  My neurosurgeon was Dr. Isaac Goodrich, affiliated with the Connecticut Neurosurgery practice in New Haven, Connecticut http://www.ct-neurosurg.com/index.htm.  He did an exemplary job with my debulking surgery (no complications) and oversaw my FSR, working with a talented radiation oncologist, Dr. Jonathan Haas  http://www.winthrop-radiology.com/wra_physicians/jonathan_haas.html.  Based on my experience, I can highly recommend both these doctors for their expertise, caring attitude and my excellent outcome at their hands.  Of course, no one can guarantee your outcome with any procedure by any doctor, but I can certainly recommend these two skilled physicians.  I'm sure you'll receive other recommendations from other parts of the country - but I wanted to start you off - and I hope the information is useful. 

Jim

[cdadams]

Thanks so much, Jim!

[nanramone]

if you choose GK, I recommend Dr. L. Dade Lunsford at the University of Pittsburgh - he brought Gamma Knife to the USA.

just my two cents worth....

[cdadams]

Your two cents worth are worth a lot more than 2 cents to me!! Thanks!

[leapyrtwins]

If you decide to go with Cyberknife, Dr. Chang @ Stanford is one of the best.

Jan