Scared

[SteveWWD]

I just got the results back from an MRI to find out that I have acoustic neuroma in my right ear.   The MRI was not exactly looking for AN, so I am not sure how accurate the size measurments are.  There are three sizes on my MRI results, the biggest being 1.5 cm, I believe the other two are 1 or less.  I am guessing that means that I have an AN sized at 1.5cm.  I immediately started looking up this , and became pretty depressed at what I found.  So far I have spoken to one Radiation Oncoiloogist about Gamma Knife, and I am almost 100% certain that I will not be doing this.  I am only 26 years old.  I have yet to see someone as young as me on any of these forums or websites.  That scares me.  I have read a little about some of the other procedures.  The Oncologist said my best bet is to wait and have an MRI in a year providing I can "put this on the shelf".  He said it is very small.  I have two appointments in the city with Neurosurgeons at Columbia and NYU.  I am afraid of the risks of surgery, and my quality of life.  Right now I have tinnitus slightly, and a pressure in my ear, and on a rare occation I lose a little balance.  Other than that I am fine.  I am set to be wed in April, and want to start a family soon.  I realize  have time, and I will be using that time to gather as much info as I can and find the best doctor.  I realize that statistics are just numbers, but I am wondering what are the risks of the different operative procedures?  And what are the risks of unrelated procedures as a basis of comparison?  I mean this is brain surgery!  And when the radiation oncologist is telling me "I am in dark waters", I am scared as hell.  Although I would like to preseerve my hearing, I can handle losing it, I think.  The facial paralysis would be devistating, but I'll live.  I guess this is my way of measuring things. 

What I am scared of is that if I wait, and it grows (which it sounds like they almost always do grow) does that make the surgery more complicated?  I know there is no real rate of growth since these are sporatic, but could I have 5 years to make a decision, 10 years, 1 year?  I don't know.  Do  go with 10 years of good hearing and basically no real problem, or do I risk it and possibly have early hearning loss, facial paraylisis, meningitus?  Do I put my life at risk now or later?  I am going out of my mind with this.  I am glad there is support out there.

[MAM]

Hi Steve - first of all I want to agree with you that having an acoutic neuroma is a very scarey thought, especially for a 26 year old, but you are not alone. My daughter is 25 and just had surgery to remove a 2cm AN on June 7, about 6 weeks ago. I know every case is different and the size and location of the tumor is a determining factor as to how one proceeds. We saw 7 specialists and had a phone consultation with the House Ear Clinic in LA and none of the surgeons advocated radiation  or the wait and see approach in considering my daughter's age and the size of the tumor. In Manhattan we saw Roland and Golfinos at NYU, Smouha and Post at Mt.Sinai, and Selesnick, Steig, and Gutin at NY Presbyterian/Cornell.  We are lucky to live in an area where there are experienced and skilled specialists in treating ANs.  My daughter chose the team of Roland and Golfinos at NYU. We were very pleased with them and with the outcome. She had no facial nerve damage (facial paralysis, etc) and we think her hearing was saved (waiting to be tested in another month). I would suggest that you do some research, as you are. so that when you see the doctors you will be better prepared for questions and their explanations. Make a list of your concerns and don't hesitate to ask the specialists. Ask them all the same questions and as you speak with each of them you will think of additional questions to ask. Let them know your fears and concerns.  For a list of AN questions for doctors, you can go to: www.anworld.com/questions/. If you have any other questions/comments, feel free to email me.
MAM

[Maryanne]

My daughter is an audiologist in Chicago.  She has worked at the University of Chicago and at Childrens Hospital.  Recently she tested her dad's hearing and the results warrant that he get an MRI.  Her suggestion is that he see a neurotologist.  They are not all that plentiful to find.
The one in our area did a fellowship at the House Ear Institute in LA.  She says that their reputation is the absolute best!  We will certainly consult with them if my husband does have an AN.  Make sure you select someone who has done a lot of these surgeries.  Ask questions about the number they do a year and their percentage of complications.  I understand they do grow, but slowly.  Take time, do the research and then make a decision.
Good Luck!   

[suelay]

My sympathies.  You are so very young.  I know a man who was also in his early 20s with the same symptoms as you (no hearing loss) but some ringing who has/had a pea-size AN.  He's super bright and did lots of research and consultation.  I think he sent his films to all the reputable doctors who were willing to do free consultation.  He ultimately chose gamma knife and is doing great, but it is too early to tell what his long-term results will be.  He went to Pittsburgh for his procedure and was very pleased with his treatment there. 

I can't give you any advice as I have no idea what I'm going to do yet and am twice your age.  If you want to talk/e-mail my friend, let me know and we can "chat" privately.  He has lots of information and was more than happy to share it with me.  I'm sure he would be with you as well.  Best wishes, S.

[Boppie]

Steve, the diagnosis is a scarey event as any of us would agree.  But waiting is not a bad idea if you can handle the thought.  Your tumor will grow someday and since you are young, there is a possibility of growth occuring during the best times of your adulthood. 

My comment for you would be that tumor growth means further compression and stretching of the nerves.  Aside from loosing hearing, you must know about loss of facial expression.  Based on my own experience with an "old" tumor that was well anchored to my facial nerve, I'd rather get treatment before the thing grows beyond 2cm.  Size seems to make some difference in the amount of compression the tumor has on the facial nerve.  There are no guarantees, and it depends on the actual location of your particular tumor.  But removing it from the facial nerve easily must be every doctor's prayer.  My own tumor, (maybe 10+ years old by my estimation), was very sticky.  I came through the surgery without my hearing and vestibular nerve.  Due to the scraping and microscopic picking the surgeon had to do, I developed late onset facial numbness that mostly cleared itself by two months.  Thank goodness.  I am satisfied enough, but wouldn't want to think of loosing my face to a paralysis at age 65 nor at any other age.  My opologies to those dear friends here who have facial issues remaining but I'd sure like to think somebody could avoid similar problems.
 
I did my research and had excellent and caring doctors.  Best of luck to you.

Note:  Several very young people have their stories posted here, teens and early 20's.  I just wish we could discover what is causing these darn things! 

[Kathleen_Mc]

Steve: I was 23 when my first AN was found, I do not know the exact size of it, to tell the truth I never even asked, it was out of the ear canal, displacing the opposite postieor lobe and within mm of the brain stem and the doctor I got was the one who could do the surgery the soonest and he told me this "if you don't have surgery you'll be dead within months and there's only a 50% chance you'll live to get off the table". I know how scared you feel! I didn't have time to research and look at options and that in itself is a good and bad thing.I had surgery, lost my hearing, balance and facial nerves then went on to have many "plastic repairs" to my face to fix it.....only to find out 8 years later the tumor had regrown (I have darn bad luck...consider the odd's of getting AN in the first place and now consider the odd's of it regrowing!).
The five years I was under "watch and wait" for the regrowth I spent researching options and it drove me banana's.

This I can tell you Steve.....it was a very difficult decision to have the surgery the second time around since I now have children to consider and truely if I were you I'd have this dealt with before having children , my  regrowth was known to my doctor before I got pregnant with my first and for some reason she chose not to tell me, it grew and so she told me....when my son was 2 months old, and I have always maintained I would have had surgery before going on to have children if I had been told when the regrowth was initally found.

Just my thoughts Steve
Kathleen
P.S. Considering the size of my AN when found and my age of 23 the doctor's cannot figure out how it ever got so big in someone only 23 given"the known growth rate of AN's" so keep that in mind.

[britbert]

Steve,

I was 28 when I had my AN surgery.  I am married and had 3 children at the time (I have since had another).  My husband was more scared than I was--he didn't want to raise these kids alone .  I got the impression from my doctor that most of his patients were in their 50's and older.  But I am realizing that there a lot of younger people with ANs too.  I had a larger tumor than you, but I do have facial paralysis and single sided deafness as a result of my surgery. My friends and family are very supportive and everyone is used to how I look now.  Some people even forget that I am deaf and try to talk into my left ear.  I guess what I am trying to say is that if you have any of these symptoms, those who love you will still love you.  You will just need to make peace with yourself.

Brittany

[kippy6]

Here's what I suggest:

Consider having surgery before the tumor progresses much larger so that you have the possibility of saving your hearing. One of the risks of watching is waiting is that you can lose your hearing in the meantime. The auditory nerve is very sensitive. So if you have the surgery while the tumor is small, you can have a surgical approach that is done that will possibly save your hearing.

I met a lady who had a tumor the size of yours initially. She chose the watch and wait approach. Later, it grew to over 2 cm, and she ended up having to sacrifice her hearing with the translab approach. She wishes that she had the surgery 2 years ago when her tumor was small enough to use a different surgical approach designed to save the hearing.

*Once your tumor gets so big (I think the cutoff is around 2cm), you lose the option of saving your hearing via surgery. Most people on this board will probably tell you the same thing.

[Boppie]

Steve, getting any one of the forms of treatment will most likely have a satisfactory outcome without risk of meningitis.  That complication is still rare even though you get to read all about the negatives of it on forums and reports online.  The key is getting treatment before the size of your An makes recovery a trial for you and your loved ones.  I agree that having treatment before you have children seems best.

[gcb]

Steve, just curious, what was the determining factor for not investigating GK/CK?

[dally1932]

Steve, I am sorry about your diagnosis of AN. I was 52 when I had my surgery in June 2002, however mine wasn't originally diagnosed as an AN, so I didn't have the support of this website until 9 months after surgery. I wish I would have had more time and an AN diagnosis so that I could have taken advantage of the resources available. Take things slow, get at least  two opinions from different Neurosurgeons and ask them how many procedures they do, what type, and what is the outcome. I found out after my surgery, that my doctor only does 3-4 per year. I lost my hearing, my facial nerves were preserved, have had chronic pain since my surgery, and developed a throat problem. I think if I had known, I would have waited and watched as my only symptom was occasional vertigo. You need to make your own decision, but take your time to explore all options. My prayers are with you & your family.

[Sue]

I, too, am wondering what in the world your radiation oncologist would have said to put you off of GK/CK procedure.  You certainly qualify, size-wise, for having that done.  Many people have had it and are very happy with the results.  But, your head, your choice!! 

Sue