ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: MissMolly on March 16, 2009, 01:56:56 pm

Title: Newly Diagnosed
Post by: MissMolly on March 16, 2009, 01:56:56 pm
Hi there,
I was diagnosed last week with a 1cm AN and am still waiting to get an appointment at Mass Eye and Ear.  Needless to say, I've been walking around in a daze since then.

I had been having increasingly worsening tinnitus in my left ear.  Audiogram showed that I've lost some hearing as well, however, hearing in background noise is almost impossible.  I've been reading through some of the posts and see that the headaches, dizziness and vague nausea aren't unusual even with a tumor the size of mine.  My ENT told me that I shouldn't be having those symptoms.  Which is why I'm so anxious about my Mass E&E appointment! 

I'm grateful to have a place to come and learn.  Thanks.

Molly
Title: Newly Diagnosed
Post by: Jim Scott on March 16, 2009, 02:57:32 pm
Hi, Miss Molly - and welcome ~

I'm sorry you have an acoustic neuroma but you should know that, here, you're among folks who understand your problems and concerns.  Please consider us as friends.  :)

Even though your AN may be relatively tiny, the location is what often determines the level of deficits you'll encounter.  Frankly, your ENT should be aware of that aspect of acoustic neuromas.  Unfortunately, some doctors are better informed on these benign tumors than others.  However, the Massachusetts Eye & Ear Infirmary has a fairly good reputation.  I hope and will pray that your appointment is productive and that you'll return to this forum and offer us an update.

Jim

Title: Re: Newly Diagnosed
Post by: anissa on March 16, 2009, 04:17:26 pm
Welcome Molly  ;D  Sorry you have to be here but I hope you'll be glad to have found us.  This is a great group and I'm sure you'll learn a lot.  Good luck at your appointment.  You obviously know your symptoms and those are all typical of AN regardless of size.  As Jim said, its more about location.  Best wishes to you as you begin your journey.
Title: Re: Newly Diagnosed
Post by: Pooter on March 16, 2009, 05:24:24 pm
Molly,

Welcome to the forum..  I trust you'll be in good hands and receive great information from Mass Eye and Ear.. Jim's right; they have a great reputation.  At 1 cm, I would expect all options to be on the table for you to consider, but that location of the tumor can play a factor in that, so talk to your doctor(s) about that..

Welcome aboard!

Regards,
Brian
Title: Re: Newly Diagnosed
Post by: LisaP on March 16, 2009, 05:34:47 pm
Welcome Molly,

I was dx last March of 07 with a small AN.  I too go to the Mass Eye and Ear and see a Dr. McKenna.  I have daily symptoms of headaches, balance, facial, ear pain, nausea ect. and Dr. McKenna tried also to tell me that some of those symptoms where not related, well I did not believe him because they were not there before.

My first symptom was a tooth ache then I developed facial pain, when I told him that he said that is strange for a small AN.  My own opinion is that everyone is different and trust yourself.  If these symptoms feel real to you then they are.

Keep in touch, let me know which doctor you are seeing and stay with this forum, it will help.

LisaP ;D
Title: Re: Newly Diagnosed
Post by: suboo73 on March 16, 2009, 05:44:25 pm
Frankly, your ENT should be aware of that aspect of acoustic neuromas.  Unfortunately, some doctors are better informed on these benign tumors than others. Jim

Hi Molly,  I too, extend a welcome to you.  (But sorry you had to join the AN club!)
I was misdiagnosed for a long time, going twice to local ENTs in 12+ years. 
Meanwhile, my sister goes with similar symptoms and has a diagnosis in 6 months, omgosh!
I used to be so angry about this - now i realize, as Jim points out, that some doctors just don't know. (even though you would think they WOULD at least have an idea.)

There are those here who didn't have this wonderful forum before treatment - God Bless them, and all the others, who now freely and patiently explain their experiences so we may all learn.

This is a WONDERFUL place, with FANTASTIC people!  So please, take a deep breath, and keep reading! 
When it gets to be too much, take a break. 
You can use the Personal Message function if you want to talk to other 'forumites' directly.

All my thoughts and prayers are with you.
Take care and keep in touch.

Sue

Title: Re: Newly Diagnosed
Post by: leapyrtwins on March 16, 2009, 05:46:41 pm
Good Golly Miss Molly - welcome to the forum  ;D  (I can't believe no one else thought to use that phrase).

As you'll soon find out, we're a humorous crowd, but we can be serious and we're full of information, advice, and opinions.

Please don't hesitate to ask us anything; that's what we're here for.

Jan
Title: Re: Newly Diagnosed
Post by: MissMolly on March 16, 2009, 06:30:01 pm
Thank you everybody.  I'm feeling so much better knowing that I'm not the only one.  I'll make sure I keep people posted as to how this whole thing progressed.  I do know that I feel fatigued a lot.  Not sure if that's because I'm working harder to hear b/c of my hearing loss and tinnitus or because of stress.  Most likely both.  Anyway, I'm just glad to have a place to talk and have some support.

With appreciation,
Molly
Title: Re: Newly Diagnosed
Post by: Tumbleweed on March 16, 2009, 11:48:12 pm
Welcome to the forum, Molly. Sorry you have an AN but we're glad to have you join us here in that case.

Your fatigue may be due to the dizziness you mentioned you have. I have constant disequilibrium (a sensation of being off-balance, which is different than the spinning sensations known as vertigo), and it definitely makes me more fatigued because my brain is constantly struggling to determine which direction is straight up and correct for being off.

All of the symptoms you mentioned are common to having an AN.

Best wishes,
Tumbleweed
Title: Re: Newly Diagnosed
Post by: GRACE1 on March 17, 2009, 06:58:44 am
Jan, you beat me to the Good Golly, Miss Molly.  That is the first thing I thought of. 

Molly:  Sorry you had to join our club, but you will find much info and peace of mind here.  Good luck to you on this journey.

Grace
Title: Re: Newly Diagnosed
Post by: Vivian B. on March 17, 2009, 07:09:44 am
Hi Molly,

I am also new to all of this. This forum is great. I have learnt a lot. Just remember that these tumours are benign and treatable. Everything will be o.k. It's normal to feel shaky when you first find out as it is all so new. Everybody on the forum is great and will help you along with any concerns. Keep well!

Vivian
Title: Re: Newly Diagnosed
Post by: MissMolly on March 17, 2009, 01:42:54 pm
Yay!  Got an appointment (tentative if he has to be called in on a case) at 4:00 with Dr. McKenna at Mass Eye and Ear tomorrow.  I'm hoping I can get some more information and answers.  Molly
Title: Re: Newly Diagnosed
Post by: leapyrtwins on March 17, 2009, 04:41:54 pm
Just remember that these tumours are benign and treatable. Everything will be o.k.

I just wanted to reinforce what Vivian said, Molly.

You are indeed fortunate - as we all are/were - that ANs are 99.9% benign and definitely treatable.  If it's any consolation, if you have to have a brain tumor, an AN is one of the ones you "want".

Glad you got an appt. with Dr. McKenna - from what I hear he's a very good doc.

Let us know what he has to say.

Jan

Title: Re: Newly Diagnosed
Post by: LisaP on March 18, 2009, 05:14:37 am
Miss Molly,

Let me know how you do with your appt with Dr. McKenna, he is also my doctor.  I like him, he is suppose to be the best.  He is a surgeon so he probably will only talk to you about surgery.

Like I said before trust yourself and go with what is best for you!

talk soon

LisaP ;D
Title: Re: Newly Diagnosed
Post by: NancyMc on March 18, 2009, 06:51:51 am
Molly,
Scarlett is in for surgery with Dr. McKenna's associate Dr. Lee, today.  We're all awaiting Rich's report this evening.  If you have a chance, swing by and give Rich a hug in the waiting area at MGH.  Wish I could be there to wait with him.
Good luck today.  My head will be in Dr. McKenna's hands in exactly three weeks.
Nancy
PS - Take something to read.  The waiting can be hours, especially for the hearing test.
Title: Re: Newly Diagnosed
Post by: MissMolly on March 19, 2009, 06:29:18 am
Hi again,
Well, I had my appointment with Dr. McKenna yesterday.  As was predicted - my wait was lengthy.  However, as I was his last patient of the day, he was not rushed through my appointment.  I spent about 45 minutes first with his fellow, Dr. McCann - very nice - who went over all the treatment options - pros and cons - very thoroughly.  I'm a speech/language pathologist so I am pretty versed in the anatomy and physiology of the hearing mechanism and cranial nerves, which helped me in my understanding of what he was saying.  But I had to turn my professional ears off and put my patient ears on as I was listening to how this all pertained to ME.  Dr. McKenna came in and basically reviewed what McCann had said with more details as to how this would impact me.  And the options are:

1.  Watchful waiting - his first choice given my scenario - and living with the symptoms and anxiety.  Issues of tumor growing and becoming more complicated to remove (not likely that it will grow that much)
2.  Surgery - 50% chance of losing all hearing in that ear and not having the tinnitus go away, possible side effects from surgery.  His choice after watchful waiting shows growth.
3.  Proton Beam radiation therapy - Stops growth of tumor - but may grow more again in 15 years - at the age of 65 I may be more at risk during surgery.  Not his favorite. 

My tumor, though small (about the size and shape of a Good 'N Plenty Candy  :D) is located right next to the cochlea, vestibule and semicircular canals - those important organs for hearing and balance.  This makes preserving hearing with surgery all the more tricky.  Because of the size of the tumor and my age (50) , he suggested watch and wait and, if it grows - surgery.  This means living with the symptoms for at least 4 more months and then, who knows?  He suggested increasing the anti depressant I'm taking (zoloft) to help with the exhaustion as well as increasing exercise  :P to increase my stamina and reduce fatigue. 

Sooooooo  After all of that, I'm home today, exhausted, trying to sort all this out and find a peaceful place to sit and think with no distractions.  I would welcome any thoughts, experiences, well wishes, funny jokes... to help me make this decision. 

Thanks so much to everyone.

Molly
Title: Re: Newly Diagnosed
Post by: EJTampa on March 19, 2009, 06:55:13 am
Hi Molly,
 
We have quite a few watch and waiters out there who are happy to be doing just that.  In the end, it all comes down to what you are most comfortable with.  Everyone is different, and for me, I wanted it out.  I wouldn't deal well with not knowing what is going on between MRI's.  At least he is offering you all 3 options, not just 2.  Some surgeons seem to shy away from radiation.
 
Good luck in your decision, and I wish I had more to offer you.
 
Ernie
Title: Re: Newly Diagnosed
Post by: m4guzman on March 19, 2009, 07:27:43 am
Hi Molly,

I am 48 and I have a 1.5 cm in my left ear, 50 % hearing loss and some dizziness.  I also have 4 kids.
5 if you count my husband.  I was given the same options as you.

I think your decision is really up to you.  What you fell comfortable with.  After a month of reading this forum (which is wonderful) and tons of info on the internet, I decided that I wanted it out.  I needed to move on with my life and not
think about it every day.  Everyone is different.

Don't worry,  You will make the right choice.  You have time to think about it and do research.

Good Luck.
Title: Re: Newly Diagnosed
Post by: MissMolly on March 19, 2009, 07:35:59 am
Hi again,
Funny about the husband being the 5th child.   ;D  Right now I'm just trying to find that peaceful place where I can sort things out without pressure.  It's hard to find!  My biggest concern are the after effects of surgery.  Though minimal, they are on the radar.  I just have to decide what's best.  Not easy!!! ???

Molly
Title: Re: Newly Diagnosed
Post by: kathylittlejohncobb on March 19, 2009, 07:48:06 am
Hi Molly,
Well, sorry you are among us, but welcome, also... :-*
As you have already seen, AN's are very individualized.  Symptoms have great range, and the location and the size of the tumor make it that way.
As far as how to make your decision, I think you have to go with your gut instincts after you research all of your options.  Personally, I made my decision much as Ernie and m4guzman did:  I just wanted it out.  
After my diagnosis by my ENT and a lengthy discussion with a neurosurgeon in Shreveport, LA, I contacted the House group in Los Angeles (at the neurosurgeon's suggestion).  During the phone consult, I made my decision..."git 'er done"  ;D and just weeks later was on the table.  Have not regretted my decision, though my decision is not the right one for everyone.
God bless you as you research, talk with your doctors and family...and your gut...and make your decision.
Kathy
Title: Re: Newly Diagnosed
Post by: sgerrard on March 19, 2009, 09:50:13 am
Hi Molly,

Since I haven't said so earlier, welcome to the forum.  ;)

I would be a little more upbeat on the radiation option than McKenna was; I think it makes more sense to look at the likely outcome (no further treatment needed) than the less likely one (surgery needed 15 years later). The same is true for surgery. It is better to focus on what will probably happen, than on all the what-ifs that could happen but probably won't. There are no guarantees no matter which way you go.

Watch and wait is a good first step, and may continue if the symptoms don't get worse and it doesn't grow. It will give you some time to explore treatment options if you end up needing to do treatment.

Steve
Title: Re: Newly Diagnosed
Post by: GRACE1 on March 19, 2009, 10:27:35 am
Well said, Steve, on the radiation option.  I don't think that I or anyone else would have had GK or CK if we thought that 15 years down the line our AN would be coming back.

Grace
Title: Re: Newly Diagnosed
Post by: cindyj on March 19, 2009, 10:34:36 am
Hi, Molly!  Don't think we've "met" yet.  You've already been given some great thoughts and advice, so nothing really for me to add.  The decision process is THE hardest thing, but you will figure it out (in time) and you will know in your heart that it's the right decision for you. 

We're all here for you with any help that we can give!

Cindy
Title: Re: Newly Diagnosed
Post by: moe on March 19, 2009, 11:33:25 am
Molly,
 My head will be in Dr. McKenna's hands in exactly three weeks.
Oh my that is punny indeed.  :D
Great that you all have the same doctor so you can compare and support each other.
 And Scarlett's surgery was a success. What a blessing!
Will keep posted.
Maureen
Title: Re: Newly Diagnosed
Post by: LisaP on March 20, 2009, 05:24:20 am
Hi Molly,


Thanks for the update, what did you think of Dr. Mckenna overall?  I also have him, I liked him but during my second visit (seen him three times now) he remembered my husband before me.  My husband looks like the big boss man from the former wwf wrestiling, anyways, my third MRI, he continues to recommend w&w.  I like you have to put up with daily symptoms.

Keep in touch,

LisaP ;D
Title: Re: Newly Diagnosed
Post by: MissMolly on March 20, 2009, 05:42:31 am
Hi Everybody,
This has all been so useful and everyone has been so kind.  I did have really good cry this morning and have decided to risk not having protection against the dark forces by not re-applying my mascara. 

When I'm overly tired (or even marginally tired) I seem to wake up with a dizzy/carsick feeling that takes time to get over.  Still trying to figure out how to deal with that.  Thanks again to everybody and have a great day.

Molly
Title: Re: Newly Diagnosed
Post by: Keeping Up on March 20, 2009, 08:45:55 am
Welcome Ms. Molly

I am a newbie too with a small intracanicular tumor - and as you can see by my siggie, a mom of four little ones.

It has taken me over 3 months since diagnosis to get comfortable with this whole scene - and am firmly in the W&W crowd (acknowledging its risk for continuous hearing deterioration and potentially the loss of any useful hearing).  It is all personal - so you will eventually come to the right decision for you. 

I should also note my 6 mnth MRI in May could change it all ... but do believe given the nature of the tumor and its location (intracanicular) I shouldn't have substantial growth so will more than likely remain in the waiting mode.

My decision was based on the dislike of the two options of radiation/surgery as being more risky than doing nothing - the confidence that obtaining treatment, given I have no symptoms other than hearing loss and tinnitus (and maybe the start of a few balance issues), will make me worse off than I am now.  So, I will wait ... until symptoms are worse than post-treatment, less risky to obtain treatment than to wait, or my doctor says it is time (I have a good 1 cm of growth until I get there ... so could be 5-10years, or heck maybe just a few more months). Again, this is very personal decision - one that I haven't seen very frequently on these boards, especially for my age (I am 37 years old ... so the likelihood of treatment is fairly high as I should live a nice long time).  But it fits my life and my personality.

Good luck with your decision - I do hope you can chase the anxiety away (I was able to put that one back in the closet a few months ago, a tremendous relief).

Ann 
Title: Re: Newly Diagnosed
Post by: MissMolly on March 20, 2009, 09:58:21 am
Hi again,

LisaP -- I liked Dr. McKenna and his Fellow, Dr. McCann.  I think having Dr. McCann come in first, look at the MRI, do brief balance and cranial nerve testing as well as an exam and doing the "first run through" of options to me was useful.  When Dr. McKenna came in, I wasn't hearing what he had to say for the first time.  It seemed to help me absorb the information better (and there was a lot!!).  I did like Dr. McKenna.  I especially like that there is a team approach for any kind of treatment and that these teams have worked together frequently -- whether for radiation therapy or surgery.  McKenna seemed very versed in describing the surgery, the procedures to preserve hearing and facial nerve function during therapy and recovery.  I was extremely comfortable. 

I took yesterday to percalate over all of the information that I had gotten from my appointment.  I have been walking around with a knot in my stomach.  I realized I need a solid plan.  My gut tells me to go ahead with surgery.  But I see the wisdom in the watch and wait.  I don't like uncertainty.   :-[

I have scheduled an appointment with Dr. Martuza, the neurosurgeon, for June 2nd.  It will have been 3 full months since my MRI.  I'll schedule my MRI for during the summer to check for growth.  Once that is done, I'll determine if I still want to go ahead with surgery in September when my kids are back in school. 

So I've kind of cheated and am doing both 'watch and wait' as well as planning surgery at this time.  I'm timing my appointments to accomodate both. I may never get to surgery, but I feel much better knowing that I have a plan, of sorts, in place. 

I'll keep everyone up to date.  Still struggling with symptoms.  This morning was a BEAR getting out of bed, but I made it to work.  Late, but I made it.   :)

Happy Friday to All,
Molly
Title: Re: Newly Diagnosed
Post by: moe on March 20, 2009, 01:27:48 pm
Molly,
It is probably easing your mind to have that option of surgery and w&w. Helps you feel a bit more in control of a situation that you have no control of!
Hang in there- one day at a time. Rest when you can- I enjoy dry heat saunas as a way to burn calories while doing nothing. I contemplate, pray and it is supposed to be good for ailments- any kind really.
Hang tough  :)
Maureen
Title: Re: Newly Diagnosed
Post by: Sue on March 20, 2009, 01:56:29 pm
Hi Molly,

A belated welcome to the Forum.  I was 60 years old when I finally got my diagnosis.  I had just turned 60 in fact, and it was only a few days later that I found out what was going on with me.  So I appreciate that you don't want to face anything drastic down the road.  Nobody does.   

Be sure to read this article about how the balance system works.  It's very enlightening. 

http://www.hearinglosshelp.com/articles/balancesystem.htm

I hope the doctors also explained that the surgical option, although highly successful, also runs the risk of additional treatments down the road.  Some patients have the dreaded re-growth, and there is no guarantee that that won't happen to you, too.  There are many what ifs and maybes and could be's and it is confusing and frustrating to come up with what is a comfortable fit.  In the end you have to trust your own instincts about what feels right for you, and then you do have to put your trust in your doctors and just pray that the odds are in your favor.
And they are!  :)  Many, many people come here, post, have treatments, come here to say they are doing good, and we never hear from them again.  Hopefully that will be your destiny, Molly! 

Yeah, being tired makes brain issues worse.  That just goes with the territory, for some reason.  Get lots of sleep.

Hang in there,

Sue in Vancouver USA


Title: Re: Newly Diagnosed
Post by: Jim Scott on March 20, 2009, 02:20:38 pm
Molly ~

I'm pleased to learn that you're making plans to eventually address your AN.  A temporary 'Watch-and-Wait' approach is fine because you're moving forward, as it were, and not simply stalling the inevitable.  Although I hope they might dissipate, I suspect that your symptoms will motivate you to deal with your AN, likely by September, as you indicated, if nothing untoward happens between now and then.

While you're contemplating your decision, many people will be thinking of you and including you in their prayers as you deal with this dilemma.  I'll be one of those people.

Stay strong and please stay connected, here.    :)

Jim
Title: Re: Newly Diagnosed
Post by: Keeping Up on March 21, 2009, 09:30:51 pm


My tumor, though small (about the size and shape of a Good 'N Plenty Candy  :D) is located right next to the cochlea, vestibule and semicircular canals - those important organs for hearing and balance.  This makes preserving hearing with surgery all the more tricky.  Because of the size of the tumor and my age (50) , he suggested watch and wait and, if it grows - surgery. 

A temporary 'Watch-and-Wait' approach is fine because you're moving forward, as it were, and not simply stalling the inevitable. 




Hi Molly (again)
A bit curious - as I assumed a few things on the first read.  Since I can't have a conversation with you ... I will just continue typing.  Based on the above description, I would assume you have an intracanicular tumor as the IAC is about 1cm before it reaches the CPA and since your tumor appears to be up against the inner ear structures (right  next to the ear drum) thus, far away from the CPA.  [See comment below - I am an accountant and don't know inner ear anatomy very well]  I would imagine this is why the doctor is suggesting W&W and perhaps reluctant to pursue radiation due to the proximity - my point, ICA tumors grow even slower than their cousins next door in the CPA.  [A bit of humor - another reason to be happily Cdn - I get along with metric measurements!]

I am also curious, because maybe I have misinterpreted your posts - how long did your ENT think you could remain in W&W/conservative mgmt.  I haven't quite gotten down what different doctors might mean by W&W (as you will read, my ENT and radiologist don't think I will need treatment for a substantial period) - is it months or years?

I am (potentially) in a similar sinking ship - however, it is important to distinguish these suckers - alas, my position in W&W.  I have been led to believe by both the ENT and the radiosurgeon that these ICA tumor will most likely not grow much beyond 1 mm/year (of courses - stats again, the tumor may react abnormally).  I have also been told with tumors all within the IAC, the W&W could be 2 or 4, or potentially 10 years - the key is, as long as you are comfortable with hearing loss and continuous follow-up (both of which you could potentially have with either surgery or radiation, in particular GK).  The likelihood of the tumor growing sufficiently to hit the brainstem without a lot of warning is very remote. 

Thus, I come to Jim's comments.  While I know it doesn't help very much in the early days post-diagnosis - and I may eat my words in a few months at my 6mnth MRI, but I believe I will sit in the W&W for at least a few years - anything more than 2 years, I don't view as temporary - I will be out of diapers in this household in two years - and that is practically a lifetime of relief.  Do I think I will eventually receive treatment - yes, but do I think the odds say it will be within 2 years - no, I think, as long as I have no symptoms that substantially slow down my exceptionally busy life (active, mom of 4 little ones, full time working in an interesting/demanding job) I won't seek treatment - save of course deteriorating hearing loss, tinnitus - I do think that odds are higher that I will have a hearing aid, at less than 40, than have treatment before 40.  I will admit, I am a bit laid back in many aspects of my life.

I have a few interesting studies/articles - some of which were published by my ENT team on conservative mgmt (a 10 year study - 72 patients followed for median 10 years - 65% patients have done nothing ... the bulk of the 'failures' occurred in the first five years) - if you are curious, PM me - I will email them on.

Again - my comments are rather specific to intracanicular tumors so I could be way off base as inner ear anatomy isn't my specialty (I am an accountant by training) as they are known to even grow slower than the CPA tumors.  I am also comfortable with hearing loss - as I will take that over the other potential deficits of AN treatment.  I am hoping I fit that long-term W&W basket, perhaps a bit of stalling to watch my kiddos grow up and become more independent, allow me to remain active well well into my 40s, and also to earn a good living (I am key source of income in this household).

Good luck - I found it useful to ask the ENT for conservative mgmt studies or other studies that fit his philosophies - especially if you interpreted you might be on the waiting ship for awhile.

As with everyone's decision, but in particular those with small tumors - I will wait on the sidelines and watch your story unfold with great interest.

Ann
Title: Re: Newly Diagnosed
Post by: mk on March 22, 2009, 09:20:06 am
I agree with Ann that having an AN probably "guarantees" a hearing loss at some point, whether it is immediate (as after translab surgery), or long term (as with radiosurgery and W&W). Oddly enough, hearing loss is more of a common problem with small ANs (inside the IAC), rather than large ones (on the CPA).  From what I have read though, I have also realized that problems like vertigo, dizziness, extreme fullness in the ear etc. are also more common with the small - IAC ANs. These can occur even after minimal growth, since the space inside the IAC is so limited therefore the pressure due to the AN can be substantial, and they can be quite debilitating.

Ann, I know that you have found a "confort zone" with W&W, but I just wanted to point this out. I think that living with hearing loss can be quite manageable, as so many have attested here, but extreme vertigo etc, can be another business ... Did your ENT discuss this at all?

Marianna
Title: Re: Newly Diagnosed
Post by: MissMolly on March 22, 2009, 10:59:20 am
Hi Marianna and Ann,

Thanks for your posts, I always appreciate learning more about other peoples' experiences. 

My tumor is actually right up against the inner ear organs (vestibule, bony labrynth and cochlea).   The eardrum is the first 'solid' thing you run into as you enter the ear canal from the outside.  So, if you're walking through my ear you would walk through the drum, the ossicles (those three little bones) and then hit the labrynth, vestibule and cochlea - the organs for hearing and balance.  The auditory nerve shoots out from there and into the CPA.Sooooo, the tumor is nestled against those three and goes through the channel in the skull and is just starting to poke out into the cranial cavity.  The neuro otologist tells me that tumors generally grow towards the brain, and it looks like mine is just getting ready to move in there.  As to how much it grows and how long that will take is the big question. 

The vertigo and dizziness are a concern, though they come and go.  They aren't debilitating at this point, but I do see them progressing.  I'm also having twitching in my left eye (a sign that the facial nerve is under stress).  As for the hearing loss, I'm a speech pathlogist and listening is a BIG part of my job.  I am also a trained singer and am a member of a very active women's acappela group.  I need both my ears to blend my sound with other voices.  So the losing hearing thing has been a big worry for me.  I'm concerned about the quality in which I do both of those things, both of which I LOVE.  It's been an emotional rollercoaster for me since I learned that I most likely will lose hearing in that ear.  The quality of my life may be impacted more than if I had a different job and interest. 

I'm feeling pretty confident in the team at Mass Eye and Ear that they are giving me the straight story.  It's all the variables that keep me up at night!  So, I'm taking my time before I make take any quick action to go into surgery.

Molly


Title: Re: Newly Diagnosed
Post by: mk on March 22, 2009, 02:02:08 pm
Molly,

there have been quite a few ANers with concerns about hearing retention recently, so it might be worthwhile looking at their posts. Tumbleweed and Tisha come to mind.
I also noticed that your doctors talked only about Proton Beam radiation. How about CK?  There have been quite a few positive outcomes with CK, including good hearing retention. You may want to contact with Dr. Chang at Stanford.

Marianna
Title: Re: Newly Diagnosed
Post by: LisaP on March 23, 2009, 05:17:22 am
Miss Molly,

Thanks for your update about how you feel about Dr. McKenna.  I too liked him but he only talked about surgery with me.  I continue to w&w and deal with symptoms daily, (oh what fun us AN people deal with!!!).  Please keep us all posted.  I still after one year do not know what I will do.  I am not due for my next MRI until Feb of 2010.  Until then my AN and I march on and on!!

LisaP

Title: Re: Newly Diagnosed
Post by: Mickey on March 23, 2009, 08:28:20 am
Hi Lisa! Reading your post I noticed my AN to be just about the same dimesions. Diognosed in 2006 I have had 3 mri's and now waiting for my first yearly in AUG. I`ve also turned 60 in this process but have had symptoms for 30 years! As per consiltation with my doctors W+W is a very good course of action when no growth and minimal symptoms are present. There are many opinions here and one that is gaining popularity is that in some cases AN`s do run their course and no intervention may ever be required. In any case a monitoring of symptoms and mri`s should be all we need to determin course of actions. Best Wishes, Mickey
Title: Re: Newly Diagnosed
Post by: Jim Scott on March 23, 2009, 08:28:35 am
Molly/Ann:

To clarify: For the vast majority of AN patients, 'Watch-and-Wait' (observation) is by definition, temporary.  While there is always the possibility that the tumor will simply cease growing, this is more of a hope than a reality, although it does occur.  Thus, I consider observation (watch-and-wait) as a temporary situation - one that is likely to change at some point.  My comments made the observation that if a patient is 'monitoring' their AN via regular MRI scans, this is progress, as opposed to ignoring the AN, altogether.  I regret any misunderstanding.

Jim
Title: Re: Newly Diagnosed
Post by: Esperanza on March 23, 2009, 12:31:03 pm
Just to add my pennyworth on watch and wait - it is all about location and individual anatomy rather than just size! 

Mine is only 12mm but starts much higher up in the IAC (in fact I only have a tiny 'tail' in there! but is already 'kissing' my brain stem - nerves of steel needed somestimes for this journey - I am holding out for now in the hope it behaves as I have things I want to complete before I 'deal' with it but of course am aware of my symptoms and how they interefere with my quality of life -  which I why I think I would plum for SBI and endoscopic which would (?) minimise recovery time and let me carry on with my life with minimal disruption - just got to work out a way of funding the £92k plus travel etc...   :o

I think these AN things are like putting a jigsaw puzzle together and just hoping you've got all the pieces to complete the picture!!

Good luck with yours!
Title: Re: Newly Diagnosed
Post by: Mickey on March 25, 2009, 10:24:22 am
Hi bambi! Just do what you are doing and let your MRI be you guide! Whatever the case there is light at the end of the tunnel and your going to be alright! One step at a time, prayers are with you, Mickey
Title: Re: Newly Diagnosed
Post by: GRACE1 on March 25, 2009, 01:36:45 pm
We are here for you.  You will be in the thoughts and prayers of a lot of people. 

Grace