I just found out yesterday.

[Tisha]

Hello everyone.  I just found out yesterday about my AN.  Shocked and shaky to say the least.  I'm 48, PT working mother of 2 boys ages 15 and 12, married 24 years.  I have one ear that starting losing it's hearing about 12 years ago, very gradually (high-pitched sounds only).  I finally got a hearing aid for that ear, love it and everything has been going well.  Then all of a sudden on September 3, my "good ear" felt stopped up and my  head had the full feeling.  Went to Dr, ENT, then finally found  out about Neurotologists and went a couple of weeks ago.  MRI was Tuesday and he gave me the bad news yesterday.  You all know how I feel.

My options are observation, radiology or surgery.  He told me that there would be almost a 100% chance of me losing my hearing with surgery with an 75% chance of temporary facial nerve paralysis and 10-15% chance of it being permanent.  He said radiology wouldn't guarantee to shrink the tumor and that more than likely I would still suffer hearing loss.  He said that his recommendation is "wait and see", hoping the tumor will not grow and I'll continue to have whatever hearing I still have.  My hearing is tinny, sounds like my ears are extremely plugged up, people sound far way, i can hear my own voice loudly and low sounds really bother me.

Anyway, does one usually have total hearing loss with the operation, and if so, why do you elect to have it?  It's really too bad this didn't happen to the ear that was already bad.  I'm feeling extremely overwhelmed at this point.  My Doctor seems very open for me to have second opinions, things like that.   He did say that if I ever get to the point where they would have to take it out they would do a cochlear implant.  He told me not to be scared, I would never be totally deaf.

Anyway, I only read about an hour of messages yesterday because I was still so upset, I had to quit reading.  I'm sure I'll be getting to "know" all of you soon.  Tisha

[andrea in slc]

Tisha, I'm so sorry you had to join our group, but welcome anyway! And yeah, why couldn't it have been the already bad ear?!

I can't help you with the hearing loss question, I just found out in September about my AN and I'm scheduled for surgery on November 13. But I wanted to say welcome and give you hugs for what you are going through right now. Hopefully someone who knows the answer to your question will join in. From what I understand, with retrosigmoid and mid fossa (two of the three surgical ways to get the tumor out) there is a chance, however slight it may be, of preserving your hearing. With translab, your hearing is gone. I'm glad your doc is open to you getting other opinions, that's great!

Hang in there, you will get through this.

Andrea

[Jim Scott]

Hi, Tisha and welcome. 

I'm sorry about your AN diagnosis but pleased that you came here and took the time and effort to sign up, log in and post a message.

Yes, we do know how you feel about now and it's perfectly normal.  Watch-and-Wait is an option and one you'll certainly want to consider, along with surgery and radiation.  I suggest you do your AN research and do follow your doctor's advice and consult a few other physicians that specialize in acoustic neuroma treatment and/or removal. 

Unfortunately, in most AN cases, whatever hearing you've lost  prior to surgery will not come back, although in a few rare cases, this does happen, but don't count on it.  The reason some folks opt to have surgery and almost guarantee their hearing will be lost is due to the reality that sometimes, surgery is their only option and if you go that route, hearing loss is unavoidable.  It's a trade-off.  Lose hearing in one ear or risk far worse if you don't address the tumor and either stop it from growing (radiation) or remove it, surgically.  In many cases, such as mine, hearing has already been lost in the affected ear so surgery poses no threat to retaining hearing. 

Others will have much to add and will welcome you warmly and sincerely.  I trust these good people who have been in your situation (and further research on your part) will give you renewed courage to deal with this.  It is surmountable and there are many people that post here who will attest to that statement.  I'm one of them. 

Jim

[tenai98]

Welcom Tisha to our elite group.  We are all hear opppsss here for you...lol...

[lori67]

Hi Tisha and welcome.

I think it's a good thing that your doctor would suggest a second - or third - opinion.  I think any good doctor should do that.  This is a big decision and you have to have all the information possible before you can make the right one.

I had translab surgery, which I knew would sacrifice all of my hearing in that ear (which was perfect prior to the surgery) in an attempt to save my facial nerve.  They say translab gives the best view of the facial nerve during surgery so they are better able to avoid damage to it.  I knew from my symptoms that my AN was already getting very friendly with my facial nerve, so I figured my best chance of preserving it was to sacrifice the hearing.  I figured I had another ear to work with.  It was not easy for me to adjust to the single side deafness (SSD) because, like many others, my body wasn't gradually adapting to a slow loss of hearing over a matter of years - I lost it all at once.  But I can say that now, I've adjusted to it quite well - it just took a little time.  I also have a BAHA, which is probably what your doctor meant to say instead of "cochlear implant" - they have some similarities, but a CI would not work on us AN folks.  (we like to be different!  )  That has helped greatly with the hearing loss and you can find information on them on the hearing issues thread on this site.

There are other surgical approaches that can attempt to spare the hearing in that ear and I'm sure some of the others will chime in on their experience.  It's not guaranteed to save the hearing, but it is at least a possiblity.  There are also others here that have had very good results from radiation.

If your doctor is suggesting "watch and wait" then I would assume your AN is on the small side, which will give you time to research your options.  There's a lot of information on this site, but as you found out yesterday, too much to absorb all at once. Take a deep breath.  We are here to prove that there is life after AN!  

Lori

[mimoore]

Oh Tisha welcome. I totally understand. It is so scary. I remember feeling such a rush of emotions. My tumour went misdiagnosed for 10 years so I was relived to find out I wasn't crazy. Scared to death to find out I had a brain tumour and when the dust started to settle I thought okay so now what do I do to get rid of this intruder.
How big is your AN?
The hardest thing for me was telling my children who are 25,23 and 11, trying to reassure them that all would be okay. Being strong on the outside and scared to death on the inside. You will be okay. You will choose the right thing for you whether it is surgery, radiation or W&W.
Research, research, research. Carson started a good thread called just wondering. He asked if we would have done anything differently. Interesting stuff. Actually there is lots of interesting stuff and we are here for you. Ask tons of questions.
Big hug.
Michelle

[carter]

welcome from another newbie - it has now been about 3 to 4 weeks now since i found out.  sorry to hear why you joined the group but from what i have seen - a good group of people.

feeling mad, sad, asking why me is  what i have been through - i am more towards the acceptance for now. 

i am new enough to not offer too much help - guidance other than to say that life goes on and i think that we all want to be here to enjoy it in the best way possible.  so enjoy th eNA part of the ride as well. 

telling others was hard.  but it has brought out some old friends and made new ones so it can't be all bad!!!!

welcome to the board.

carter

[Kaybo]

Tisha~
I know that you are just so overwhelmed right now and that is perfectly normal - it is a LOT to take in!  Know that you WILL be OK and this is something that can be overcome!  I had surgery almost 13 years ago when I was 25 (you can check out my blog if you want - address below).  I went on to have 3 beautiful daughters and have a wonderful hubby and a great life!  We are here for you - let us help you!!

K   

[Tisha]

Oh, thank you all.  I'm teary just reading everyone's wonderful posts.  I have learned some new things to ask my doctor already, for instance...how close is my AN to my facial nerve.  I find the thought of having facial paralysis just as scary as hearing loss in a way.  That unnerves me very much.  I've only known for about 24 hours at this point so I'm still feeling very deperate.  You warm welcomes have helped a lot.  Thank you.   Tisha

[Debbi]

Tisha, welcome!  Take a few deep breaths and remember that it is NOT malignant!  And, yes, the fear and uncertainty is totally normal and I've venture to say that we've all experienced it.  Along with the feeling of being totally overwhelmed at first.

First things first - definitely get several other opinions, preferably from doctors who specialize in different ares of AN treatment.  It is pretty common that surgeons will favor surgery and radiolgists will favor radiology.  The good/bad news is that many AN patiens have multiple options between different surgical approaches (middle-fossa, translab or retro-sigmoid) and different radiologic approaches (Gamma Knife, Cyber Knife and fractional radiation).  All have their pros and cons.  In cases like mine, the options were narrowed because of the size and location of the tumor. 

Like Lori, I had translab which offered the best approach to the tumor and the clearest look at the facial nerve, which the tumor was stuck to.  Also like Lori, I woke up with facial paralysis.  However, at almost six months post op, I have regained quite a bit of movement and am looking forward to more recovery over the next 12 months.  It's an adjustment, but you WILL get through it if it happens.  Just based on the folks on this board, I don't think that the majority of people end up with facial issues - heck, we pirate-smile people are really, really elite!   

SSD is a bigger possibility - and, with translab, a certainty.  As Lori said, you can look into a Bone Achored Hearing Aid, BAHA, which is specifically for people with total one-sided hearing loss.  There is also an external option, worn like a traditional hearing aid, called a TransEar.  You can find more info on both by doing a Google search.  Because you have diminished hearing in your "good" ear, these would be options you'd probalby want to thoroughly investigate.

If you can share your city/state, some of us may be able to offer some other suggestions to you for surgical opinions.  I can't stress enough how very important it is to find a surgical team with significant experience in treating ANs.  This is particularly true for surgery since it is a very difficult and complex surgery.  I looked for a team that did at least 50 of these surgeries a year, and who had been doing them for at least 5 years.  That was my criteria, and everyone will be different - just make sure you are comfortable that you are in the best hands possible if you opt for surgery.  Same goes for radiation, too!

You can send your MRI film (a duplicate, not the original) the House Ear Clinic in LA and they will do a free telephone consultation for you.  They are probably the leading treatment center for AN's in the world, certainly in the US, so an opinion from one of there doctor's is quite valuable.  There are a lot of folks here who have been to HEI for surgery, so I am sure some of them will pitch in with more info.

Tisha, again, try not to stress too much.  You have options, and you have time to consider them.

Debbi, sending you good vibes from NJ

[Sue]

Hi Tisha,

I also wanted to welcome you to the forum.  We all certainly understand your fears and anxiety.  Treatment for your AN is usually based on the size of the AN and it's location and sometimes doctors take into account your age and physical condition.  It's also based on the specialty of the doctor that you are seeing.  Many doctors will want to operate on you because that is what their training dictates.  I hope you can get a second opinion.  There are some wonderful hospitals around the country where people have gone to be treated and they have been happy with the outcome.  Where do you live?   One of the premier hospitals for Vestibular Schwannoma - Acoustic Neuroma (same thing, two names!) is House Ear Institute in Los Angeles.  They would be happy to give you a second opinion but you need to send them your MRI.  They do a phone consultation.  And it's free.  www.hei.org  The important thing is to get a highly experienced team. 

You might be interested in reading a wonderful article that was brought to my attention by another Forum member.  This explains, I think, very nicely how your balance system works.  You may not know that your balance system is affected, but it is.  It doesn't sound like you are noticing any balance issues right now, but you may down the line.  This article certainly helped me to understand some of the things that I was experiencing.  You can read it here:         http://www.hearinglosshelp.com/articles/balancesystem.htm

Many people choose surgery because they have to because it's a large tumor or it's pushing up against the brain stem.   Many choose surgery because this is what feels "right" for them. This usually comes with finding the "right" doctor that explains things and makes them feel like they are in good hands, quite literally as it turns out!    Many choose surgery because they can't stand the thought of a tumor residing in their head, even if it's dead.  Some people choose surgery because they aren't comfortable with radiation.  People choose radiation if they have a smaller tumor that can be treated that way.  They choose radiation because it's a non-invasive type of treatment and that's what feels "right" for them.   They choose radiation because they are older and don't want to have to go with a microsurgical approach and the possible complications that may ensue. Radiation requires more follow-up MRI's, usually, and it can take about 2 years to find out if the radiation has killed the AN.  It almost always does, but there have been a few "failed" radio-surgeries. 

I've noticed that it seems like surgical patient and radiation patients often times have similar post surgical issues.  Most of those seem to be because of the nerve damage.  That article that I mentioned at the top of my post talks about problems that both types of patients can experience.  Many of these issues resolve themselves over time, as the balance nerve on the opposite side takes the reins, so to speak, and takes over the balancing act. With a lot of people that's already being done, even though they don't know it and even before they knew they had an AN.  That was my case anyway.  My AN was at 2 cm when discovered, so it'd probably been slowly growing for 15 to 20 years. 

Having an AN can be the most frustrating, annoying, irritating, expensive (depending on insurance), tiring, stupid, idiot thing that anyone can get.  It can be hard to explain to your family and friends and even your doctor about what you are going through.  It is hard to explain the sensations and symptoms that you have.  I wish I'd read that article that I mentioned earlier, when I first found out about my AN.  Doctors should hand this out to you when you are diagnosed.  Even if you have no overt balance problems, the AN is affecting  your balance system and that causes things that you don't realize are governed by your balance system.  I wish every newbie would read this article. 

I do wish you all the best and I hope your symptoms calm down soon.  Ask any question here, talk to people, find your local support group if there is one, and that all helps to get you through this unexpected journey.  It's a trip that you didn't plan for- you were headed to England, and you ended up in AN Land!  Sometimes, things like that happen.  But, here in AN Land, we're a nice group of people.

Sue in Vancouver USA

[wendysig]

Hi Tish,
Welcome to this forum  Sorry about your AN diagnosis, but glad you found us.  I discovered this forum the day after my diagnosis as you did and am thankful I did.  I lurked rather than posting at first, but found everyone here to be compassionalte and very halpful.  We do underatnd what you're going through and will support you however we can.  You didn't say how big you AN is but since you have so many options it must be small.  My advice for now is research ANs on the internet as well as reading posts here and definitely get other opinions from surgeons and radiation oncologists.  Most surgeons will say surgery  and most radiation oncologists will say radiation, but you may find the rare doctor that some of us did,who will explain in detail all  the options without bias  and supporting whatever you feel comfoftable with. I get it that you trust your doc, but getting a fuller picture and gathering information  by seeking other opinions and doing your own research is  important too. 

Best wishes,
Wendy

[pauline]

Hey Tish,

I am also sorry you have an AN but you have found a great site with a lot
of wonderful and supportive people.  I have been on watch and wait since 7/08
with my next MRI in Jan. 09.  When first diagnosed, I was in shock and overwhelmed.
I found this site right away and read most of the posts everyday for a month.  After
a few short posts of my own, I finally calmed down.  I am now glad that I have the
time to research all the options I have.  This site has given me a lot of links and posts
that is helping me sort through the treatment options so I can decide what is right for me.
It also comforts me to read about  people who share the symptoms I am experiencing
along the way and they all understand what I am going through!  I wish you well as
you go through your AN journey!

Take care!!!  Pauline

[leapyrtwins]

Hi, Tisha -

I'm sorry you had to join us.  Being diagnosed with an AN is quite shocking and very frightening, but hopefully we can help you with those feelings since as you say "we know how you feel".

One of the most important things to remember is that everyone is different and your treatment outcome may or may not be like anyone else's.  You need to educate yourself on your options, look at the possible side-effects and the odds of them occuring and then decide what is best for you.  I'd recommend contacting the ANA and getting their literature - it explains a lot about ANs and I found it very helpful.

How large is your AN?  You mention watch & wait, so I'm assuming it's fairly small.  Also, where are you located?  Chances are someone on this forum has had treatment somewhere near you and can suggest a doctor or doctors for 2nd or 3rd opinions.

I had surgery about 17 months ago (retrosigmoid approach) and had no facial nerve damage.  However, my surgery left me SSD (sometimes retrosigmoid does; sometimes it doesn't).  I have a BAHA now and I find it's helped me immensely.

Your doc might have been right when he said "cochlear implant" not "BAHA".  It pretty much depends on how much hearing you have left in your non-AN ear.

If your non-AN ear has very little or no hearing, a cochlear would probably be the way to go.  The BAHA is for SSD (single-sided deafness) and generally works best if you have serviceable hearing in your non-AN ear.  If your non-AN ear has diminished hearing, but it's not too bad, you might be able to have a BAHA and use an Intenso rather than a Divino.  The Intenso is more powerful.

Jan 

[Palace]

Tisha,


Welcome!

Please keep us posted of all your options, location of where you see specialist doctors, size and perhaps shape/location of your AN.

I'm pleased you have family support. 

When you feel like more data, this forum has been more organized than in the past.  It is much easier to read and research.

There is also an AN News which you may subscribe.  It is sent through the postal mail.  (not very costly)





Regards,



Palace