I'm 27, and terrified

[willIscubaagain]

Hi There,

I've been diagnosed with a medium to large AN, about 4 hours ago.  Suffice to say, the idea of having my head cut open and tinkered with does not sit well with me.  I have a lot of questions and am not sure where to start, I hope I'm not posting this in the wrong place.  I'd like to read any information your willing to share.  The bottom line is I'm scared to death.  I like who I am now and dont want to tinker with it.  I have almost no symptoms except mild hearing loss in my right ear.  I'm scared I wont be able to Kayack, SCUBA dive or do any of the active things I now do.  On the other hand, the AN is already pressing against my brainstem, so the wait and see and radiation methods are ruled out (from what I understand)  I hate the idea of being stuck at home for a month after surgery and hate the idea that I might not be able to make the goofy faces I do often.  Bottom line, I'm quite scared.  Can anyone offer any advice.....

[wind6]

Hi,
 I just wanted to say I understand your fear. I have my surgery the 2nd of August. My AN is about the same as yours in size and is also pressing on my brainstem. I have many symptoms but hardly any hearing loss. Radiation and wait and see are also not options for me.
This is so new to you that I think you are probably still in shock. I think everyone of us feel or felt the same things you are feeling but it will get a little easier. I suggest you take time to digest all of this and look for positive people to support you. Here has been a wonderful place for me. Sadly, no one can tell you ahead of time exactly what your outcome will be or what post-surgery means for you. I wish someone could tell us beforehand.
As I see it though, you are young, you obviously are very active and strong, and you now have all of us to lean on. You will be in my thoughts and if you wish you are more than welcome to write to my e-mail. Take a little time and give yourself the freedom to feel all that you feel...you will soon be past this.

[cookiesecond]

Hi,
I can totally relate to how you feel. I was diagnosed in May and have surgery schedued for August 2. I have been reading everything that I can, Most of the time it helps but there are some horror stories out there. Everybody"s situation is different from the initial reaction, treatment decision right on until  recuperation.
I am new here but this is a great site for information and support.Take a deep breath and try to remain positive.There are many people out there that return to very active lifestyles in a short amount of time.Keep your head up and remember you are in our thoughts and prayers.
Take Care.
Lynn

[David Wrubel]

Bottom line, I'm quite scared.  Can anyone offer any advice.....

Will:

You'd be the rare exception if you weren't scared. And your instinct to ask questions here and elsewhere on the Internet is exactly right. I've been there and know how you feel. There are different kinds of advice, but a couple of basic points to keep in mind as you learn about this and gather enough info to make the right decision. I'll try to summarize the key things I learned from this experience.

One: This is not surgery you'll die from. And it doesn't hurt nearly as much as you'd think.

Two: The outcome of the surgery dictates what you will be able to do for the rest of your life. There's a better than even chance you'll lose hearing on the tumor side...which is a small price to pay actually. You need to start accepting that likelihood ASAP.

Three: The outcome of the surgery dictates what you will be able to do for the rest of your life. The quality of the outcome is based almost exclusively on the skill of the neurosurgons you select. But, and this is a big but, it's their experience with ANs that is most important. This is very delicate surgery, so you want the right people messing with your head. The tumor grows on your facial nerve. If the surgeons have to cut that nerve, you will lose a good deal of function and feeling on that side of your face. Unfortunately, many people have an outcome like this. You want to limit the chances of this happening to you...that is Job 1.

Four: The outcome of the surgery dictates what you will be able to do for the rest of your life. So...You want to find surgeons who do at least 35 per year and have done so for a good number of years, and whose record of leaving the facial nerve anatomically intact and the facial functions normal or near normal is excellent. This is the most important decision you'll make, so don't hesitate to ask doctors these questions. Ask these questions, if possible, before you make an appointment. And if you're unhappy at all with their experience or success, go elsewhere.

Five: Get two, preferrably three opinions, but avoid seeing doctors with little direct experience in removing ANs. In my opinion it is a waste of time to see them at all.

If all goes well, there is no reason why you can't resume all or most of your activities after you'ver recovered.

There's a lot more, but if you can adapt these to your situation, you're already way ahead of the game.

Best of luck.


PS...Where do you live, and do you remember how large your tumor is? They usually describe the size in centimeters.

[wanderer]

I'm 28 had my large AN removed in January,   I was back to jiujitsu class, working out in the gym and a host of other things  there were a few weeks where it was rough but all in all not bad.   
 
you may have to take serveral months off from those things but I think you should be able to do them again once you are all healed up.

[jan pentecost]

I, too, agree that to NOT be scared would be abnormal.
I found out thru a hearing test...inner ear hearing loss. I didn't have insurance at that time and went online to find out what caused the loss. I prettu much diagnosed myself as there was only one reason for the hearing loss that fit my symptoms. I then read all I could to find out what the treatment would be.
I knew I had an AN before seeing the specialist.
I have to disagree here with some...you do not have to just see a neurologist..neurosurgeon...other specialties have alot of experience with AN's.
My doc....whom I put my life into his hands...specializes in Otology and Neurology...surgeon in both fields...and is a Basal Skull Surgeon but not considered a Neurologist. This tumor is actually a tumor growing on nerves (Neurology). You have to be proactive and do your homework. Dr. Hodgson has performed over 500 of these surgeries and gave me patient referenced to tlk to.
I knew going in what the outcome COULD bring...I was afraid of surgery BUT not of the tumor so much as I knew they are rarely concerous. Big relief there. So much of this and your outcome is contingent on your attitude. And acceptance of what can happen
I knew I would lose my hearing and balance nerve...a given. How much facial paralysis if any was up in the air.
I woke up and knew my left facial side wasn't doing squat. I set out thniking that my life had changed somewhat BUT how badly it was affected was up to me.
The doc let me know right off the bat that the quality of my life would not be improved as a result of this surgery...that helped me in my plan of attack in dealing with this.....honesty helps with the outcome.
My balance is obviously affected but that doesn't stop me from trying...I went back to work.part-time...two weeks and two days after my surgery. I didn't want to sit at home alone....I needed to be around people....we can be our own worse enemy.
I am a bit over two months post-op....I work full-time...go where I always went and do what I used to do prior to surgery....I am just ultra-cautious knowing my balance can throw me off...the only time it really affects me is if I am tired and if I am getting up and down alot out of my chair at work.
The most difficult part for me is "patience"...I want my face back to normal BUT my impatience may only hinder my recovery...I have had nerve conduction studies done on my face and my nerves are all intact and 100% receptive. They were tweeked during surgery...and the tumor is sticky and stretched my nerve.....I am now getting twinges in my face...YAHOOOOOOO.
With paralysis you have to know your eye lid on the affected side will not close resulting in dry eye.....I am having a narrow gold bar insertd into my upper lid to give it some weight and help it close...it does close when I sleep. This is a temporary proceedure until I regain movement in my face. It may take a few more months....it may be into a couple years....each of us is different in our recovery.
I know  yourfear......you are not alone....but if I get anything across in this long-winded post....don't get caught up in negativity.....try to accept what you can't change and continue to live your life....you may not be able to scuba dive for awhile....but you will be alive to probably dive at a later point.
Find out what you can do......
jan

[russ]

Hi willIscubaagain!
  Seems at this point in your life, you need to feel the fear and proceed forward. Everyone's afraid when diagnosed, up to the time of surgery, and even after sometimes.
  Sorry I can't soft soap or peddle this for you.
  I've heard of some returning to scuba diving after a time. If there is vestibular loss or damage, being underwater is as close to weightlessness as we can get on earth and can become dangerously disorienting for some. I didn't scuba dive before or after but did canoe and ride a road bike for years up to 90 miles a day. I did this with one balance nerve.
  You'll get through this!!
  Russ

[jan pentecost]

...another thing..
I am very pleased with my incision. I had the Translabryinth Approach: this is directly behind the ear and best exposes the facial nerve. To be honest...no sugar coating: if the use this appraoch, you lose all hearing on that side as they have to sever the hearing and balance nerve....to save the facial nerve. My incision runs about one inch from my ear and the length of my ear. My doc used dissolving sutures and it has healed beautifully. I had a piece of skull removed about 3 inces in diameter and he replaced it with a cement like composite so the area isn't soft but feels like the rest of my skull...only a bit numb. I had a one inch wide strip of hair shaved...that is all.
I know this is overwhelming but get informed and educated with this Acoustic Neuroma.....it isn't a death sentence by any means.
Andee bring your own jammies to the hospital......oh, how wonderful the feeling to put on those soft, flannel PJ's after wearing that stiff, scratchy gown!!
jan

[george]

I went to my surgeon yesterday and learned a great deal

Basically, he said I should be able to do all things afterwards that I am doing now.  These include hiking, downhill skiing, caving, mountain biking, snorkeling, and scuba diving.  I specifically asked about diving, and he said I should be ok--even at depth.

I also have a friend of mine who was operated on several years ago.  He was in the hospital for three or four days and was able to hike and climb by the end of three weeks. He has totally lost the hearing in that one ear, but he can still rock climb, mountaineer, downhill ski, hike, backpack, and cave, although he says he has some slight loss of balance with high speed skiing and has to limit his caving to 18 hours or so.

So, anyway, I'm scared too, but what I found out so far is good news.

Good luck!

george

[willIscubaagain]

Thanks for your email, you'll have to let me know if you get back to diving.  I'm scared that after this surgery I'll be vulneruable to vertigo and be screwed when it comes to diving. Not only is diving a hobby, but I'm a marine biologist, so you can imagine my worry.  Anyway, I'm thinking about taking a week off for a dive trip prior to the surgery, might as well have some fun. 

Jake

[george]

That's what I did--I took some time off any went diving in the Keys.  However, they are not as nice as they used to be.

But they've postponed my operation for a while, so it is going to be quite some time before I can tell you anything.

Where do you dive?

[macrules]

Hi there,

I was diagnosed with a Tumor 6 years ago now (size of a golfball), had the surgery 5 years ago, transvestibular (as described above) with total loss of balance
and hearing on that side. I have to say balance is a very minor issue nowadays, the only situation where I really notice I have a problem
is when it is dark and the ground is slightly uneven (for example walking through a forest at night) (not that i know why i do that, but hey... ;-) ).
As for hearing i agree with David, It's a small priice to pay. and you get used to that too. (it's really more your friends having to get used to it than you)

As for scuba diving, I used to scuba dive a lot before all this, and to be honest, I haven't done it since, not because anyone has told me not to, more
because I am worried, 3 different doctors have all said, "give it a go -see if it works, it shouldnt be a problem" I'm thinking about giving it a go this summer though
-It's long overdue

I have done a lot of Snorkelling though down to 10-15 metres, without any probs whatsoever, The problem of accumulated pressurised air
is out of the equation with snorkeling, but still, pressure and decrompessing the sinuses and all that -no problem.

I'll let you know how the diving goes if i work up enough courage to try it out.

[GM]

You've got a great sense of humor!  I love the foot note from Arnold!  Believe it or not this will definitely help you through this.  Since I am a "Zapper" (Radiation) patient, I can't help out on the surgery stuff, but there are many caring and smart people that do their homework and contribute on this site.  Just remember research yourself, the more you understand the less you'll be afraid.

Good luck and keep the sense of humor!

Gary

[russ]

Hi
  Well, my feeling is Drs who say, " Go ahead and give it a try", have not been completely disoriented under water with a vestibular loss.
  One thing about it, if disoriented in cloudy water, the bubbles always go up!
  Keep you composure mates, if disoriented.
  Russ

[Jessie127]

Hello there,

  As you can see we are all in this together......I'm also 26 years old diagnosed with a medium size tumor in May and things haven't been easy since.  I have my surgery scheduled for the end of August and the doctor has chosen to do the middle fossa approach since I still have my hearng.  The first doctor that I went to locally I can say scared me at first because all at once he gave me all the possible risks and what could happen but I know that's their job but I was still trying to sink in the fact I had this tumor before getting slammed with everything else....................Like someone said earlier we are all scared but as I'm reading the majority of the people that have had the surgery or radiation done are doing great now..............All of the doctor's I've seen though have told me to rule radiation out because of my age because they say i'm still young for that.