trying to make a decision but so many opinions

[riggsflute]

So I just had my 3rd office consult as well as 1 phone consult so far and I feel I'm no closer to making a tx decision.  As a musician, I am really hoping for my best chance at saving some hearing but each dr has given me a different opinion as to what might be possible and how to do that.  ENT said, do trans-lab and forget hearing.  Neuro said, do retro-sigmoid because tumor is too close to cochlea to radiate and save hearing.  Phone consult with Slattery at HEI said possibly still radiation or middle-fossa to save hearing.  Todays radiation dr says not sure about hearing but do radiation.  Part of me just wants to laugh the other part wants to cry & pray.  I know this is a decision that only I can make and I'm sure in the end I'll be able to, but tonight I just wanted someone who has been through this to hear me and understand the frustration. 
Julie

[wwarr]

Julie,
I hear you and understand your frustration!!!  It is so hard making the decision of which treatment to pursue.  I think its the hardest part of your AN journey.  My suggestion too you is follow your gut feeling and let that lead you.  Pray about it and you will know.  Do what feels right for you! That's what I did.  Everyone here suggested a translab but I took am a musician vocalist and wanted to try to save my hearing.  I did what my gut told me to do, and did it.  It wasn't until I made that decision that I felt peace.
This is what I will pray for you.  That you'll find your treatment plan and feel good about it.  What you're feeling us so normal and its okay to vent!  That's what we're here for.  Please know you will be in my thoughts. Take Care!  You can d :-\o !  Stay strong :-) Wendy

[riggsflute]

Thanks Wendy!  I know what you say is true but I needed to hear someone else say it!  Julie

[CHD63]

Hi Julie .....

Wendy said it perfectly so I will not repeat what she said.

Truth of the matter is all of the doctors are giving you their "best guess" because none of them can guarantee a result.  Each of our bodies/brains react differently to surgery or radiation.  MRIs only tell part of what they need to know.  Often things look very different in the IAC by the time they do surgery.  If radiating, how much swelling occurs post-treatment is a big factor on hearing preservation.

Not to be doom and gloom, but if your AN is up close to the cochlea, this lessens the chance for useful hearing post any treatment.

As both you and Wendy said, it is ultimately what you feel in your gut is the right thing to do.  That being said, I will be praying that you will be led to the best possible treatment and at peace with your decision.

Clarice

[jaylogs]

Oh wow, I think the worse part about this whole process WAS trying to decide what to do.  But after I had made my decision, it was as if a giant weight was lifted from me.  At that point you can just sit back and let someone else do the driving, so to speak! So no worries, you'll get there, in time! Hang in there!
Jay

[Chances3]

Hi Julie,

I'm reading your email and I want to just cry with you - and I am a guy.  You are a musician, so reading that you might lose your hearing is such a serious issue.  I say that not to make you feel any worse, but losing hearing is a big deal for all of us, but much more for you.  Wendy and Clarice gave you some sound advice.  As Clarice correctly points out, the results are not a template, we all recovery differently, and what is on a MRI is not necessarily what the surgeons will deal with.  This suggestion might be unrealistic, but if possible, could you go back to each doctor and ask them based on your tumor's size/location and the procedures they want to take, what percentage of YOUR patients came out of this with hearing.  Ask them to give you some numbers like " in the 10 years I have done this, I have saved 60 percent of the hearing of my patients".  If you could get a good statistical picture from the three opinions, perhaps this would be an easier decision to make.  In my opinion, the doctors owe you that kind of data, it's your right, so don't be shy - demand it in a professional way.  I hope that helps, my heart truly goes out to you my dear. 

God Bless you,

Bob

[james e]

Make a Ben Franklin list...good in one column and bad in the other column about each option. Leave the emotion out of your decision. Is it worth saving your face vs saving your hearing, etc. I'm not sure I know why your docs gave you so many options, but you know what they said. Write it down, study the options, and the answer will come to you. DO NOT BE IN A HURRY. Your first post said you wanted to "hurry along." Slow down a little. One day this will all be behind you, and you will appreciate that you took your time and make the right decision. This is the hardest part.

[millie]

Riggsflute-Like you, I am very confused.  I totally identify with what you are feeling and finding your post today is real therapy for me.   I think I have a decision as to which way to go, then I read more and I start all over again.  Thanks JamesE for the advice on writing lists, pros and cons.  I believe Karen or Bob have also said that no matter what we choose, we have to be sentinels the rest of our lives.   That's the reality.
Community hug!
Millie

[riggsflute]

Thanks everyone for the encouragement, prayers and reminders.  What a great thing it is to have this forum and have people who have been through it.   Thank you, thank you.  I needed all those comments.
Now for the next week,  I'm going to go on a AN vacation and take a break until my next drs consult in a week.
Julie

[MDemisay]

Julie,

That's the ticket slow down, don't have anybody rush you into a decision, make a list pros and cons, however, don't be to quick to follow the ENT's advice compare and contrast what a neurosurgeon has to say about a neurosurgical procedure or an oncologist has to say about radiating it. Be careful when mixing specialties.

Unless they are specially trained in both neurosurgery and Gamma Knife or Cyber Knife. For now, take a vacation from decision making. Meditate on your own wellness. It is a long road that you are on, which many people have taken before you, we are all here to help and pray if you need it!

Be well,return often!

Mike

[stephSF]

Julie, hopefully you are on your break away from here.  But when you return, I hope you will be closer to making your decision as it does seem to help.  I am a musician, albeit not professional. And did have Translab at HEI this past January.  Being SSD does change the way one hears and feels music.  I was sad at first...but that was replaced with the gratitude I have to be alive.  Post surgery can have its variety of challenges but I do not regret my decision.  I still sing sometimes...and do listen to music.  Hang in there Julie.  You can do this, just be easy on yourself when you are feeling it so strongly.

[PaulW]

Hi Julie,
My AN is only 2mm away from my cochlear, but it was only small too.
Many AN's start close to the cochlear, so your situation may not be as different as you might think.

I recently went through the literature available to ANA members.
I also read all of the Symposium presentations at the last two ANA conferences.

If you are unsure of which way to go, having a good read of this material which maybe helpful.
The presentations from the Symposiums give you a very good insight, as to what the best doctors are thinking.
I really recommend this reading.

There are a number of papers out there showing that hearing loss from radiosurgery is related to the radiation dose received by the cochlear. If the radiation dose to your cochlear is greater than 4 Gray, hearing loss is increases.

When I asked my doctor about how much radiation my cochlear received I found out it was entirely outside the 20% isodose line..
In plain english... my entire cochlear received less than 2.6Gy. So my cochlear should not be affected by the radiosurgery.

There is also a paper somewhere on pubmed, showing that hearing preservation surgery is more difficult and less successful if the AN is extremely close to the cochlear..

I ended up having single session Cyberknife. I figured the flexibility of the Cyberknife robot would make it easier to avoid radiating the cochlear.

To borrow a phrase "individual results may vary".
In 3 Days I have my 2 year anniversary since Cyberknife.
My hearing is better now than it was prior to treatment, and is considered completely normal..
I went snow skiing last week (Australia), and quite surprised myself when I found out that my balance has also recovered.
Black runs, or runs with lots of bumps in poor visibility were definitely out of bounds for me...
No longer.

I am back to my "old me" and feel very fortunate that the "old me" has returned.
After years of feeling tired, and then hearing loss and balance problems, I thought that was as good as it was going to get.

I can't tell you how greatful I am to be back to my old self.

Keep looking for answers.
I highly recommend reading the material available to ANA members to help make your decision.

[millie]

Great to hear of your experience, Paul W!  Thanks for the hope and positive vibes.
Millie

[riggsflute]

Again, thank you all for the posts, encouragement and infomation.  I had another consult today and while the news for the hearing isn't great, it is good to meet with drs. who explain the whys for me a little more.  The surgeon today agrees with Dr Slattery that my best chance for hearing preservation is a Middle Fossa approach, however with how close the tumor is to the cochlea, he is doubtful whether he could really save the hearing anyway.  The big issue today was this surgeon, Dr. Brodee, recommends in general that I wait another 3 months, rescan and see if the tumor is growing for any treatment except Middle Fossa, which if I choose that, then he says he would recommend right away based on the fact that I am on the edge with my size and if it grows any then Middle Fossa may be out of the picture for me. 

So I have a little more information.  It was great to take my AN vacation.  And it is good to hear Paul say he is back to the "old me".  Very encouraging.

[It is what it is]

Yes, I agree.  The decision making process is very difficult.  My hearing is a very important part of my job, so I chose to have middle fossa surgery a couple months after diagnosis to decrease the chance that I may lose hearing before I had my tumor removed.  My hearing is the same as it was going into surgery and I am very grateful for that.  Unfortunately, even though my tumor was small, it had grown into my facial nerve and a tiny bit had to be left in order to not damage my facial nerve.  I am thankful I didn't wait any longer.  Others have tumors that don't grow for years.  Good luck with whatever decisions you make. 

karen