Does growth = immediate action?

[chance1212]

Last week I had a neurosurgeon and also someone at House asking why I wasn't getting my AN out since it grew 4 mm in 7 months. I also read on House's site that growth requires action. When I got my last MRI in February, the doctors still left the choice up to me..not swaying me one way or another. Sometime this leaving it up to the patient is stressful!! I also found out mine is in the canal...is this bad? The one doctor was saying the facial paralysis side effect happened more often than they like. How often does this happen? I understand that ANs are like snowflakes--no two being alike; however is there any percentage on this?

[MDemisay]

Dear Chance,

I am no doctor, but I can tell you that once uou have surgery your life will be changed! You need to slow down and do some research. I can tell you that you have little time though.H:ouse is a good Center. But there are others around the country.

First thing is get copies of your MrI's and send them out for additional review typically 2 or 3 doctors should concur. As I've said surgery is life changing so consider all your options first.

I am sorry to have met you in this way but you seem to be at the very beginning of your journey the ANA forum is full of helpful people who have life experiences to share, so come back often we will give you the support you need!

My point is this, you are at a critical juncture in your life having brain surgery is no easy thing! Go slowly (not too slowly) consider all of your options and make a po\con list for each.

You are in the drivers seat as each of us is with these decisions!

Do not be frightened, you are among friends here!

Welcome to the forum!

Mike

[chance1212]

Thanks Mike. So you're saying life changing in a negative way, right? I feel sometimes like I've done TOO much research. But my next thing is to send information to House. I think it may be too expensive to go there for surgery. I decided to not do surgery this summer for the reasons you stated...making sure it is the right thing to do in my case. I also have gone and gotten 2nd and 3rd opinions like suggested on this forum. I am ok with Vanderbilt..just wish they would direct a little more. I am reading so much and learning a lot. My AN is one of the small ones that is powerful! Balance issues, lost hearing quickly--both of which affect my ability to be an effective 3rd grade teacher. Vanderbilt is saying I'll have to wait 6 months for BAHA after surgery. I am trying to see if they'll do that first--I need to hear better. I have an appointment this month to discuss this possiblity. I am most concerned with the paralysis thing. All the reading & research won't give me the ability to see what lies ahead. I am also a Christian and know God could choose to heal me. In the meantime I am trying to make wise decisions. I also don't completely understand why recovery is so long. Especially since I have no other health issues.

[MDemisay]

Chances,

It depends on how big your tumor is and whether they take it all or leave a portion of it  called a sheath on your facial nerve. In my case, I wanted to preserve my facial nerve but my doctor said I may have to cut one of your vestibular nerves and since you have hardly any serviceable hearing I'll cut your hearing nerve and install a screw that will hold the BAHA.

I am 8 years out of surgery now and I have had to have a yearly CT scan because I have had brain surgery in 1974. The problem is now I have to go in for radiation.

I have a screw that was installed for the BAHA but have elected not to have the BAHA. As far as I am aware they only do the installation of the BAHA after AN surgery. You will find this out. I also am Christian (Catholic) and I believe that God does not give us anything he thinks we can't handle.

HE brought me back to this forum to share and encourage others to be proactive in their care as it says (in my liner notes) research , research , research decide and then leave it up to God.

I pray all the time, and I meditate too cope. Warning before you decide, you may not sleep well this is very normal. Once you have decided, sleep comes easier!

A key thing to do is to get a notebook or sheets and write down pros and cons of each group and
that helps you decide better.

Others will help you if you ask. There are many interesting and patient people here to help you out as we go on this very interesting journey together.

Mike

[Suu]

Mike - you said it all and said it well mate. 

Chances - you definitely are the driver of your own life and getting 2nd or 3 opinions may be of help too.
I wish we had a crystal ball to see the outcome of any sort of surgery but sadly we don't so go with your gut feeling.  Whatever the outcome of that decision will be the right one for you.  I've gone by the mantra that 'it's better out than in'.
If you have adverse side effects then we are here to help with that too.

Please keep writing to us as I'd love to follow your journey and you have a lot to give on this site for others.

Kindest wishes coming your way,
Suu xxoo

[chance1212]

My AN is at 1 cm after a 4mm growth in just 7 months. I would like them to do the BAHA now and leave me on watch & wait. I am going in to discuss this later this month. Why do you not use the BAHA? I am really hoping it helps me.

[Suu]

Hi again Chances.

Please update us on what happens?

I was never offered a BAHA after surgery as I wasn't a suitable candidate after my inner ear and ear drum were both taken out with the large AN and then the ear canal was completely filled to stop a CSF leak.

You idea of being fitted with one prior to surgery is very interesting.

Best of luck and wishes coming your way.

Suu xxoo

[leapyrtwins]

Dear Chance,

I am no doctor, but I can tell you that once uou have surgery your life will be changed!

Like Mike, I'm not a doctor either, but I respectfully disagree that surgery will change your life in a negative way.

I'm almost 5 years post op (5/31/2007) and the only thing I can't do post op that I could do prior to surgery is hear out of my left ear.  I have a BAHA and being SSD isn't a huge issue for me.

You should do research, as Mike suggests, but the treatment decision you make is up to you.

Jan

[leapyrtwins]

I don't think having a BAHA implant prior to AN surgery is common - at least I've never heard of it.

Some docs will combine the BAHA implant with the AN surgery, and some won't.  My doc falls into the latter category, but it was no big deal.

BAHA surgery is absolutely nothing like AN surgery.  Much, much shorter recovery period, done as an outpatient procedure, etc.  BAHA implants can even be done with local (as opposed to general) anesthesia.  90% of my doc's BAHA implants are done that way; including mine.

Jan

[MDemisay]

Chances,

I did not mean to infer that the changes that you would go through after surgery were negative, just that depending your outcome from surgery symptoms like facial droop, balance/dizziness, ability to hear (or not) out of the affected ear, and mood depression might result.

You at least should be aware of these before they appear (or do not), everybody is different.
Depending on the method of surgery and who you select to do the surgery your outcome, may differ.

Which is why you should pick the best surgeon for yourself, if you decide to go for surgery.

For myself, I have adapted to life without a BAHA. I find that with relatively few adjustments, like positioning myself so that conversations occur on my right side, going to restaurants and sitting with my left ear (the one that no longer hears) to the wall, when going to plays, I often bring cotton (to stuff into my good ear) until the show starts or else I will hear sounds coming from near and far rows......


As far as I know, the BAHA is positioned after the surgery, when there is a hole already there beneath the skull. Otherwise if you go through surgery, they will have to remove the BAHA to do the surgery, I suppose. You should check out what I'm saying with a neurosurgeon as 8 years have past and there may or may not be another option.

In any event, come here as often as you like, you are among friends here. Discuss your frustrations as well as any successes

I, for example have come back here and found comfort after dealing with my surgery(even 8 years after).Initially, I dealt with the surgery and it's after effects alone with the assistance of my family. None of whom had been through an AN surgery. I had to rely on my own resources for therapy and after care.


Please be assured that you have found THE excellent resource for anything related to Acoustic Neuroma care.

I will pray for you whatever you decide.


Mike