how did you decide?

[mk]

Dr. Gantz has excellent reputation. He obviously considers that the smaller the tumor the more likely to save hearing. Keep in mind that at any point there is a possibility that you might experience sudden hearing loss, which would obviously complicate things if hearing preservation is the main goal.
Most AN patients are resigned to the fact that they will experience some level of hearing loss, either during W&W, or following surgery or radiation. Dr. Gantz seems to be convinced that he can save your hearing, if the procedure is done soon. I wouldn't doubt this, he is the expert.
From your point of view you need to prioritize how important it is to save your hearing (or remain at the same levels as you are now), versus having major surgery, which can have complications, and all the disruptions that go with it. Quite a few choose W&W in hopes that they will avoid the disruption, but knowing that some hearing loss is very likely. Others have hearing preservation as their top priority. This decision is entirely up to you.
The last point I want to make is that for small tumors, quite a few here had excellent hearing outcomes with radiation too (most commonly fractionated, CK). The major centres quote a 70% hearing preservation rates with CK in small tumors.
That being said, having such an experienced doctor (especially on middle fossa surgeries), with a good record for hearing preservation, right in your backyard is not something to be overlooked easily. Tough decision; ask yourself what are the possible reprecussions/outcomes of every option, and which one of these you are most willing to live with.

Marianna

[CHD63]

Well said, Marianna ..... I would have to agree.

Clarice

[luttman]

FYI

http://www.neurosurgery.pitt.edu/news/neuronews/pdf/2010winter.pdf

[Syl]

Twindy,

It was so difficult trying to make sense of all that the Drs were telling me. It would have been so difficult making a decision without the ANA & the forum.

I was a candidate for all 3 options, surgery, radiation, & W&W. I didn't want to wait 6-18 months to see results of treatment. That's why radiation wasn't for me. One surgeon told me that inflammation alone can cause nerve damage. So I ruled out W&W. If my hearing & balance nerves had already been damaged, I didn't want to wait for the tumor to grow more & possibly cause facial weakness or facial paralysis. Knowing that surgery can cause further nerve damage, I decided I had to get the surgery ASAP.

I had retrosig in an attempt to save my hearing & fully aware that this surgery results in the highest rate of post-surgical headaches. Do I regret my decision? Not at all. I chose what I felt was the lesser of the evils for me. I lost more of my hearing with the surgery & I have struggled with chronic headaches. I don't know that opting for the other surgical approaches would have avoided headaches. I find it best not to second-guess my decision.

I'd say that the first 3 years after surgery were very difficult. Because of time & a proactive attitude, I can say that it is so much better for me now.

Syl

[jockieau]

Hi Twindy

Factors that have influenced my decision:

I wanted to have another MRI after my initial MRI to see whether I had a tumour that was rocketing along growth-wise - this enabled me to understand the ball park I was playing in.  2nd MRI showed no growth.  My 3rd one is in a few weeks and I feel my symptoms have increased, so it will be interesting to see.

I prefer surgery over radiation.  I want to know where I am at after the surgery - and deal with whatever the outcomes are then - SSD, facial issues, fatigue, feeling fantastic, whatever.  I don't want to have radiation and worry that every twinge is the tumour growing / dying / taking my hearing / etc etc.  I want post "dealing with it" (in my case surgery) to be about recovery / getting better - however long that takes and whatever is requried.  So surgery is my preferred way to go - and it will be middle fossa due to still having good hearing in that ear.

My surgeon has stated he will recommend surgery when the MRI shows growth (or my symptoms are worse).  I don't want to have surgery until that point as I don't want to have a bad outcome and think "well basically I felt fine before having the surgery, and now I am SSD / droopy faced / headaches / or whatever the problem is".  I want to feel I had the surgery for a reason / that there was a driver for it.  I think "growth" is a good enough reason. 

I am not prepared to continue with W&W if there are signs of growth after an MRI, as I will then worry that the AN is becoming more instrinsically involved in the nerves e.g. that it will be more tricky to remove, increasing risks.  I wouldn't want to continue with watch and wait and then find after surgery that the tumour was wrapped up in the facial nerve, for example.  I would then question "if I had it out earlier, perhaps this would not have happened".  Of course it might be wrapped up in the facial nerve as we speak, but mine is only small (7mm x 6mm) so my "action trigger" is signs of growth, and hopefully I'll not be too far along that things are getting completely !@#$ed up.  If they are, well, I don't know that the growth between one MRI and the next was really the thing that made the difference - that outcome was probably my destiny even if I had rushed into the surgery up front without any W&W.

If my hearing suddenly goes prior to surgery (which can happen even without growth) so be it.  I won't be happy, but feel a bad surgery experience / outcome - facial issues being my biggest fear - would be worse than SSD.

Within my parameters I agree with the doctor who says "what are you waiting for" - but if the thing isn't moving at all and not causing any symptoms I would answer "I am waiting to know the thing is on the move".

So growth for me = time to whip it out!

For me, time was the key to getting my head straight.  It is always worth getting more than one opinion too, no matter how qualified / experienced your doc is.  I even sent my details to House (I am in Oz) and had a lovely and informative calll from Dr Brackmann, who recommended immediate removal.  I consider him a world expert, but still feel happier with the current alignment with my surgeon and his recommendation.

Hang in there Twindy, you will come out the other side* soon (*enlightenment on your AN isssyooooo!).

Jockieau

[LisaM]

Greetings Twindy,

You've gotten some great responses to your question and I have enjoyed reading this thread.  Another thread you may want to take a look at is here:

http://www.anausa.org/smf/index.php?topic=3791.0

Last spring I was in your shoes.  I was diagnosed in April and felt that I had to take action by late May.  The doctors were all saying I needed to act quickly.  That it was better to do it sooner than later.  I was reading a novel recently written by a surgeon and in the book he shared some inside lingo that doctors use: "Why wait when you can operate" and, "If in doubt take it out".  Hey, they are surgeons and that's what they do.  And some do it VERY well.  Surgery has comes such a long way.  We are lucky to have these new surgical procedures available to us.

For me surgery just felt wrong and radiation didn't feel right either.  I was so torn.  And waiting and watching didn't seem like an option.  The doctors were advising against waiting and watching but only gave me a 50/50 chance of saving my hearing with surgery.  Surgery came with a long list of possible complications.  I have a 5 year old daughter and that was another BIG consideration.

After obsessively reading this forum everyday, I decided to wait and watch and try a more holistic approach.  I started doing aggressive acupuncture treatments with electricity.  I stopped eating wheat and dairy.  I stopped drinking coffee and switched to green tea.  I avoided salt and sugar.  I started drinking a lot more water.  I took supplements, curcumin, reservatrol, b vitamins, holy basil and most recently added honokiol to my list.  I also started doing a lot more Kundalini Yoga which works specifically on the nervous system.  I do it almost everyday now.  I also refused to take ownership of the AN.  I referred to it as the AN in my head, or the marble in my head.

 I had an MRI last July that reported that the AN was stable with no growth.  The Dr. said he still did not recommend waiting and watching but since it was stable, it would be OK and we would do another MRI in 6 months.

I'll say this next part with caution, I just had that 6 month MRI (10 months since diagnosis) and apparently the tumor has reduced in size by about 5mm.  I'm not sure what this means yet but I do know that wait and watch was the correct choice for me.  Even if the AN continues getting smaller or stays the same size, I still may lose my hearing.  So far I still have my hearing and it is seemingly stable.  Tinnitus comes and goes, but usually it's because I'm tired or I've been around loud noises. 

From what I've read, there are ANs that grow very quickly and those you have to look out for.  That's why the Drs did the 3 month MRI, to see what the growth rate was.  My hope is that I can hang in there for awhile if not forever and not ever have to choose a treatment.  If I wait long enough maybe a better treatment will come forth.

I'm not a doctor, but I personally feel that estrogen and cortisol along with adrenaline have something to do with the AN in my head and that is what I focused on.  Hopefully the reduction in size is not an error with the most recent MRI.  I won't have another MRI for 9 months.  Fingers crossed I'll have good news then.  The link to the thread I posted at the top of this post was what gave me the courage to wait and watch.  You 'll find what is right for you.  Listen to your heart.  Happy Valentine's Day.

Lisa M

[Twindy]

Thank you all so much for your thoughtful responses.  Yesteday I cancelled my surgery for Friday so that I can slow down and learn more about radiation. If I decide surgery was the way to go, I will reschedule, hopefully April, May, or June.  So now step two in this process, gather as much information as I can and get some opinions regarding radiation.

[stephSF]

Hi twindy.  I was diagnosed thanksgiving 2011 and had Translab lab on 1-25-2012.  I chose surgery over ww and radiation because I did not want to wait for the tumor to get bigger and more attached to my nerves and press further on my brain stem.  I did not want to have radiation because it seemed like the chances of splatter and turning things from benign to maliganant....or changing the cellular structure..well my gut David no way!  Plus I am 47 and I have 6 children at home still, so I felt like getting this thing out of my head now and moving on with my life and not waiting was right for me.  I am almost 3 weeks post op.  I am doing fantastic and do it regret having surgery at all.  I even drove today, have been doing some cooking.  I am still in the be careful moe but dr. Friedman told me last night that after another week, I can do as I wish.  I asked him about my new stationary bike.  It is an agonizing decision I know.  But you will do what is right for you.  If you choose surgery, however, you will be courageous and with a great attitude...will do awesome.  Good luck twindy.  )

[chloes mema]

Twindy - I'm so happy for you that you have made the choice to learn more and bide your time. 

Karen

[PaulW]

In 2003, I discovered that a friend was completely deaf in one ear, caused by a 2cm  acoustic neuroma.
She was in her early 30's, had two young children aged 3 and 9 months.

She had it removed in a 13 hour operation, her facial nerve was compromised,  and she died 3 weeks later from acute liver failure as a result of an allergic reaction to the anaesthetic.

So when I discovered I had an Acoustic Neuroma in 2010, surgery was something I was not keen on.
I chose Cyberknife and I am very happy with my decision.

Hearing has come back and is almost as good as it ever was.
Wonky head, stuffy ear feeling, tiredness, all gone.

I am back to my old me, and after 3 years of symptoms I did not think that was possible.

[mk]

Reasons that I chose radiation initially (in no particular order):

-My son was a baby, and my daughter was 4 years old at the time. I had just returned from maternity leave to a very demanding job.
-No help from immediate family close by - both my husband's and my families live overseas.
-My husband couldn't take a lot of time off work, fearing for his job (this was back in 2008 during the recession, with companies downsizing etc)
-I was afraid that if I had serious side effects like vertigo, headaches, needing rehab etc., I wouldn't be able to take proper care of the kids. Given the possible side effects, hearing loss seemed to me at the time the less worrisome.
-No qualified doctors in close proximity, meaning that I would need to have surgery out of town, posing all sorts of problems with childcare etc (see point 1 above). I was also afraid that in case of complications, I would be able find qualified specialists in my town, meaning again more travelling.
I was essentially asymptomatic, and knew that I will likely be worse off after surgery.

These were the reasons why I chose radiation at the time, even though I knew that for me it was a long shot, since my AN was already quite large. I thought I would give it a try. Even though I know the outcome now, looking back I still think that I didn't have another option.
Yes, it didn't work. But it bought me some time, as in the 3 years that followed my kids had grown enough, the job situation was more secure, my mother in law had retired and was able to  come and spend a few months with us, and I did my research thoroughly to choose a very highly skilled neurosurgeon.

Marianna

[leapyrtwins]

You have to decide for yourself - don't let anyone else, including a doctor (unless you have no treatment options due to size and/or location) - tell you what to do.

IMO there are two parts to this decision:

1) who will be your doctor and 2) which treatment is best for you.

I'm a little unique here because I only went to one doctor - a neurotologist that my ENT referred me to.  He does both radiation (GK) and surgery and I loved him from day one.  Just knew that he was the doc for me, so that decision was easy.  If I didn't like the doc - or he insisted on one treatment over the other for me without reason - I would have consulted with others until I found "the" one.

My doc wouldn't make my treatment decision for me - flat out refused - so that part was a little harder; and although I was initially not happy that he refused to make my choice, in time I came to understand that he was absolutely right. 

The first words out of my mouth were "there's no way I'm having surgery", mainly based on the length of the hospital stay and recovery and the fact that I single-handedly parent two children who were 10 at the time.  I couldn't imagine being off of work or unable to take care of my kids for any length of time. 

But when I started to consider radiation I realized it wasn't for me.  First and foremost, I just wanted to have the tumor out of my head so I could get back to my life.   I also didn't want to deal with the followup MRIs post radiation and the thought (at least in my mind) that every little twinge, headache, etc., might mean a tumor that was continuing to grow.  In addition, I wanted to know my side-effects upfront so I could deal with them (surgery) vs. potentially waiting 12-18 months for side-effects to occur (radiation).

So, I sucked it up.  Had a heart-to-heart with my family about the help I'd need with my kids and with my boss about needing time off for brain surgery. 

I knew in my heart, my head, and my gut that I'd made the best choice for me - and I've never second-guessed myself.

You want to get to that point - both with the doc(s) you choose and the treatment you choose.

It's one of the hardest parts of the AN Journey, but you'll get there.

Have faith and good luck!

Jan