Teacher scared of the future

[tgillesp]

Hi,
I've posted a few times and so many have responded with helpful advice.  At this point, after all the reading, I am so scared of what my future in teaching may be.  I still waiting on my ENT office to get back to me with info on where to go and what to do.  I am wondering if there are any other teachers here that would be willing to talk about your experiences with your treatment and how it has affected your teaching job.  I am divorced, live alone, family out of state, and all friends are teachers, so I won't have much help.  I think my insurance is going to be a problem if I seek treatment out of state.  After reading other experiences and speaking to a few people on the phone, I am afraid of not being able to continue teaching.  The thought of trying to survive on disability scares me.  I know I'm thinking way ahead, but this is going to also affect my choice of treatment.  I would prefer surgery to just this thing out, but I just cannot possibly not go back to teaching.  This would be the only reason to opt out of surgery.  But at the same time I am already having problems teaching.  With the hearing loss, the tinnitus, and 2 hearing aides, I can hardly hear when my students talk to me or ask questions.  It is causing me much anxiety, especially because the students seem impatient with me.  I have tried explaining my hearing loss, but they forget, and I remind them daily.  I cannot imagine trying to go back with even less hearing, possible balance problems, facial paralysis, eye problems, etc.  I would really like to hear some words of wisdom/experiences from any other teachers out there, either currently teaching or retired.

Also, are there any links I can read where all the treatments options are explained and compared in one link.  I am reading so many different things from so many different sources, it is hard to keep it all straight.  A side by side comparison would be nice.

Also, I know many are willing to talk, but I am wondering if there is some link where we can go just to read where people tell about their experiences.  I'm reading them in bits n pieces embedded in other topics.  It would be nice to just find a topic devoted to everyone just telling their story pre-treatment, type of treatment, after effects, time frame, outcome....

Many thanks to all who remain faithful to reassuring us newbies and giving your advice.  I know many people come here scared at first and are just seeking advice.  To those of you that have stayed for years dedicating your time to reassure and guide those of us with new diagnoses, thank you thank you thank you.

[Tumbleweed]

tgillesp, this is a copy of a post I made a couple years ago, comparing surgery with radiation treatments. I hope it helps you.

With surgerical resection (cutting the tumor out), you run a much higher risk of damage to facial nerve function compared with radiosurgery's results in that regard. For example, with my size tumor, I stand about a 31% chance of permanent ipsilateral facial paralysis with surgery, but only 1% chance of same with GammaKnife or CyberKnife treatment. Resection also poses other risks: roughly 10-15% chance of chronic headaches (thought to be due to bone dust being left behind inside the cranium after the operation), a slight chance of cerebrospinal fluid (CSF) leakage, and (very rarely) cognitive or behavioral changes (memory loss and personality changes). And in many cases, surgery involves cutting the vestibular (balance) nerve, whereas radiation treatment preserves the anatomical continuity (but not always full function) of the vestibular nerve... That said, radiosurgery/radiotherapy only (hopefully) kills the tumor and does not remove it (like resection would). The recurrence rate for surgery and radiation are about the same (cited to be roughly 2 to 3% in most studies).

As for radiosurgery, GammaKnife (GK) and CyberKnife (CK) are both more accurate than standard FSR (fractionated stereotactic radiation) such as Novalis. CK is also a form of fractionated radiotherapy, but its accuracy gives it a leg up on standard FSR.

CK delivers a more homogeneous dose to the tumor compared with GK. CK delivers only 15% higher dose to the center of the tumor than at the periphery, whereas GK delivers fully double (100% greater) dose at the center compared to at the periphery. CK advocates believe that GK's higher dose at the center of the tumor increases the chance of damage to nearby healthy tissue. Also, GK delivers one large dose to the tumor because one treatment is all you can do with GK (this is because a ring is fitted to your head for the treatment and, once it's removed, there's no way to get it exactly in the same place for a second treatment). With CK, on the other hand, a thermoplastic mask is custom-fitted to your head and the tumor's location (in relation to the mask and your bony structures) is plotted into the computer; on followup visits for treatment, they put the mask on your head again and you're ready for the next dose. This flexibility allows CK to apply smaller doses to the tumor than GK with each treatment; together, the smaller doses add up to the same total biologically equivalent dose as you would get with GK's one and only treatment, but (theoretically, at least) the hearing nerve and other healthy tissue has time to recover in between treatments (whereas the tumor supposedly doesn't recover as quickly). Presumably due to the fractionating of dosage, studies show CK yields slightly better results at preserving hearing compared with results for GK. Furthermore, GK's ring is screwed into the head (the screws stop at the skull) to keep it stationary (so that the radiation stays focused on the tumor), a mildly invasive procedure. CK is totally non-invasive: a series of overhead X-rays tracks the patient's head movements and tells the computer-controlled CyberKnife machine which way to move to track any small movements the patient may make so that the radiation stays centered on the tumor. GK advocates say that's all well and good, but GK has about 40 years of track record, whereas CK has been around a lot less time and is not as proven of a treatment as GK. (CK was approved by the FDA in 1999, although Stanford University Medical Center has been using it since 1994 in clinical trials because their Dr. Adler invented CK.)

Best wishes,
TW

[tenai98]

Hi
And welcome.
I am a teacher, sort of.  I teach driver education inclass and incar.  I have been back to work for a yr now and I am not having any difficulties other then the lack of hearing like I use to...I use to chuckle to myself at what I 'heard' from the back seat from the teens when they were whispering. Given the nature of the incar portion, I decided to wait to go back to work for 5 months...Even thou I got the green light to drive early on.  I need to be sure I was able to handle some situations we get into...ei kids stepping on gas instead of brake...And I believe there are several other teachers here...
JO

[CHD63]

Tracey .....

I know other teachers will respond here.  In the meantime, I am a retired school teacher, but feel I could have gone back to teaching junior high students.  (I was retired before the AN diagnosis.)  The biggest issue for me would have been my balance.  If I had returned I think I could have turned my issues into a positive with the students.  Older students can understand if you state what is going on in a very positive matter-of-fact way.  If you treat whatever you are dealing with as "normal" for you, they will accept it that way and go on.  Obviously if for some reason you are totally deaf (highly unlikely), that could be a problem for teaching.  Depending upon your school and/or principal, you may have to modify your teaching environment.  In our high-tech wif-fi world, surely there would be ways to boost sound in a classroom setting.

If you have not already done so, be sure to send for the ANA free materials ..... they are most helpful in putting information all in one place.  See http://anausa.org/treatment_options.shtml  for treatment options listed right here.

Keep asking those questions.  That's why we are here.  Clarice

[Jeanlea]

Hi,

I am also a teacher.  My tumor was large (3.5 cm) so I didn't have any options regarding surgery or radiation.  It had to be surgery.  In the end I got facial paralysis and the accompanying eye problems along with facial numbness.  My balance came back fairly fast after surgery.  The surgery also caused me to lose all hearing in one ear.  Luckily, my hearing in the other ear is fine.  I've gotten a TransEar, which is like a hearing aid, to help with my hearing.  Even though it seems like I've had some problems following surgery, I've found that I have no problems teaching my students.  I'm an elementary teacher (4th grade) so maybe that helps.  I inform my students that they need to speak up if they wish me to hear them.  It also helps to have them looking at me.  Although there is no guarantee, from what I've read on here people with smaller tumors tend to have better outcomes. I would think that your chances of returning to work would be quite high.  I returned to teaching after 8 weeks with the first two weeks being half days.  You don't want to get too tired.  
Good luck to you.

Jean

[leapyrtwins]

T -

we were all scared when we were diagnosed with an acoustic neuroma, so if there is any consolation, you are definitely not alone in this.

My best advice to you is, don't deal with an ENT - find a good neurotologist.  Not only will a neurotologist know more about options for treating your AN, he/she will also know more options to help you deal with your hearing loss.  My neurotologist goes things with hearing loss that my ENT has never even heard about (BAHAs, CIs, latest hearing aids, Esteem). 

Also, since your AN is small, I personally recommend finding a neurotologist who does both surgery and radiation for ANs.  Both options should be open to you (although location may have some bearing on that) and you want someone who will not be biased in the treatment they recommend.

In other words, docs who only treat ANs with surgery, generally recommend surgery - and docs who only do radiation, generally recommend radiation.

There are lots of personal stories on the Forum, but you are right, unfortunately they are embedded in many different categories.

I just did a search on my very first posts and there's not one of them that tells me whole story.  You'd have to cut & paste several posts together to get the entire picture. 

I can honestly tell you that there is life after an acoustic neuroma and one day - hopefully in the very near future - this will all just be another bump on the road of life for you.

Hang in there.  Educate yourself, find a good, qualified doctor, and lean on us.  We've all been there before and are more than willing to help in any way we can.

Best,

Jan

[msmaggie]

Good Morning!

Yes, there are several of us on the forum who are teachers, and nearly all of us returned to a full teaching schedule.  I ended up having a meningioma instead of the suspected AN, so while the surgery and recuperation were the same, I do admit I had an easier outcome. I taught 4/5 graders, and kids are amazingly tolerant of whatever issues you may be dealing with.  They accept differences as long as you are upfront about explaining what you need their help with.

My faculty couldn't have been more supportive.  They brought meals, books, movies, and chocolate, a sure cure for anything! You just have to let them know you are going to need their help.  People are usually good about responding to a specific need.  It's the wondering about what you need that holds them back. You will need to "confide" in someone about your needs and fears, and word will get around.

The ANA has lots of good info about the different options.  I read and researched, sent my MRI to anyone who would look at it, and followed up w/phone conferences. Even if I had no intention of going to a certain place, I didn't hesitate to find out what they thought.  The more you know, the easier your decision will be. It IS a scary time, and all of us were, at some point in time, paralyzed by all the info and choices.  It comes with the territory.  Sooner or later, you will know what seems right for you.  And then you will breathe a huge sigh of relief!

Stay in contact with us and let us know how we can help.
Priscilla

[Jim Scott]

Hi, Tracey ~

I'm not a teacher so I can't offer any answers to your perfectly reasonable questions but, as you can see, we do have quite a few teachers among our membership that have been able to resume teaching, post-op/radiation.  I'm sure, in time, even more will be posting with advice and encouragement. Your concerns are certainly valid and while I'm confident that, with excellent doctors and your own determination to get back in the classroom, you'll come through whatever procedure you choose with flying colors.  I did, and I'm just one of many.  Although we have to be realistic and recognize the risks inherent in either radiation or surgery, There is ample reason for optimism on your part.

Jim

[tgillesp]

Thanks to all for the replies.  I am glad to see that some have returned to teaching.  Funny thing is, at this point, I am really not scared of the AN or what treatment I choose.  I know I will be at some point.  I am just terrified of coming back to teaching and struggling.  I teach high school.  I have mentioned before that I had hearing loss in left ear for years, which is where AN is, however my right ear always compensated.  I didn't experience hearing loss in right ear until a little over a year ago.  It began sometime in May 2009 before the school year ended.  I suddenly found myself unable to hear my students when they asked a question, especially if the other students were talking.  I thought I had an allergy or sinus problem and figured it would clear up.  After a flight to visit my family it seemed worse.  Last year was my first full year of teaching with the hearing loss in right ear.  I had so much anxiety because, although I explained to my students and asked them to speak up, many times they would say never mind.  That bothers me more than anything, especially when a co-worker said it.  I thought high school kids would be more understanding since they are older, but I find that they are more annoyed than understanding.  Don't get me wrong, some are very understanding, it is just the few that makes teaching difficult, and they are the students that would cause the discipline problem anyway.  I don't sit with co-workers in the faculty lounge anymore because I cannot participate in the group conversation and it is embarrassing.  I am afraid to have any treatment on the AN ear because I don't know the answer for the hearing loss in the right ear and don't know if it will continue to progress.  All my research shows a BAHA or other devices that transmit sound to the good ear would not help me since I don't have a good ear.  I know I should be more concerned about taking care of my AN then going back to work, but all the anxiety I have already suffered in teaching has taken priority in my mind and I know if it gets worse, I'll have to get out.  I really do appreciate all of the help and concern I have received.  It really does ease my mind to read other's stories and positive outcomes, as well as suggestions.  I do think I need to consult with a nerotologist about my hearing concerns, and will look into that.  My doctor is setting up an appt with drs at Vanderbuilt in Nashville.  I don't yet know who or what specialty.  I know that I have a difficult situation with the bi-lateral hearing loss and that choosing a treatment option for me will definitely have to involve the best outcome for hearing preservation. 

[tgillesp]

Another question, my ENT mentioned to me that sometimes with a small tumor they can take it out through the ear canal without cutting.  Has anyone ever heard of this or know any information about this?  I have not found anything in my research that would involve this procedure.

[Cheryl R]

No, there is no way to remove an AN without going thru the skull.        Over time being around here, have heard many who have ENTs who don't have a clue about ANs.               My first visit to one told me I had Menieres and when asked if I could have a tumor,said I just get anxious!           I later had to take an elderly aunt to this guy and not happy to have to be around him.    I did get an apology though when told him I have NF2.               He called her just, too anxious when she had problems with not wanting to plug her trach and see if could get by without it.    That is another whole long story but her trach was due to paralyzed vocal cords.      Cause unknown but maybe due to having chemo for cancer.   Virus?    Came on suddenly though.
                                                     Cheryl R       
                             

[Cheryl R]

Tracey, it is hard when one does not have the typical way of an AN.       I know that too well and what is best to treat it is hard.   
   I have heard a little of something called contralateral hearing loss which happens when one side has been deaf and then the other side does it too and no reason seen for it.          Not sure in your case of course.               I just think that your AN should be bigger than it is for such a long time frame of your loss on that side.     I did not realize that the other side has not been less as long as the AN side was.   
    It would have to be hard to be a teacher and be in the situitation you are in with the hearing.     Some teenagers are mature and will to be of help to you and some aren't.               I know what it is like to have loss on both sides and be more isolated.    I am fortunate to have some improvement but still do have problems and is frustrating.     Mine is not job related.           You do need to see a very experienced neurotologst.            Along with Vanderbilt, think would be interesting to see what House says.
They can do a free consult if sent your films and will call you.               
                                                               Cheryl R

[allisjbh]

I teach and totally know what you mean. I'm exhausted just from my body having to strain to hear, see, talk, and balance. I just received bad news today - no movement or sign of regeneration. It's been 9 months. I'm looking at BAHA, eye lid weight, some sort of surgery for reanimation or quick fix lift. Would like to take a sabbatical to resolve some of these issues.

[tgillesp]

Allison,

I was just reading your other post before checking this one.  I am so sorry for your news.  I am new here and just trying to get information before making my treatment decision, so I am certainly not in a position to offer you any advice, but I certainly want to offer my support.  Like you, I feel that every day teaching is a strain for me to hear, and I haven't had treatment yet.  But I do have hearing loss on both sides and wear 2 hearing aides.  They just do not work well in the classroom environment, especially with the more talkative students.  I feel like just looking for a new occupation, but I hate to give up my years in the retirement system.  I cannot remember if you said what grade you taught.  i do know that if you are in the elementary grades, the students will be more accepting.  I taught jr. high for a while, and I always found the students to be loving and loyal to their teachers at that level.  I know I would feel more comfortable back in that setting.  I just don't find high school students to be the same way.  Some are, but most are not.  I am sure that, in time, you will soon regain your confidence and hope that your school year goes well.     

[CHD63]

Tracey .....

You said you wear hearing aids in both ears.  When was your last audiogram (of both ears)?  Hearing loss can change from a whole host of causes (fluid behind eardrum, build up of ear wax, sinus infection, etc. etc.).  Make sure all of those possible causes have been eliminated.  Then, make sure your audiologist is well-trained and experienced with a variety of hearing assists.

I say all of this because following my AN surgery I lost all but 20% of my hearing in that ear, but with 100% speech discrimination.  The first audiologist I went to (six months after surgery) prescribed what she referred to as the "top of the line" hearing aid and I paid $2500 for it.  I was never pleased with the amount of hearing assist with it.  I struggled and returned to her multiple times for adjustments, ear wax removal, etc.  With a twist of good fortune, she left the practice and I had to switch to another audiologist (just completing her doctorate in audiology).  I told her of my dissatisfaction.  She discovered I had chronic fluid behind the eardrum so steroid countdowns cleared that up.  She also talked me in to trying a different brand of hearing aid that she felt would be a better choice for me.  WOW, what a difference!  I can now hear nearly as well as normal and most of all have my directionality of sound back!!

Giant strides are being made for hearing assistance these days ..... and rapidly.  Please do not give up on exploring additional possibilities with someone who is experienced, knowledgeable, and cares about your case.

Clarice