Author Topic: Newly Diagnosed  (Read 12379 times)

MissMolly

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Re: Newly Diagnosed
« Reply #15 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
Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.

EJTampa

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Re: Newly Diagnosed
« Reply #16 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
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

m4guzman

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Re: Newly Diagnosed
« Reply #17 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.
1.5cm on left side MRI 2/2/09
Some hearing loss
Thinking about surgery

MissMolly

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Re: Newly Diagnosed
« Reply #18 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
Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.

kathylittlejohncobb

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Re: Newly Diagnosed
« Reply #19 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
Retrosigmoid at House/St. Vincent's in Los Angeles 4-4-06; partial hearing saved on AN side;
Dr. Marc Schwartz & Dr. Rick Friedman, my heroes!

sgerrard

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Re: Newly Diagnosed
« Reply #20 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
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

GRACE1

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Re: Newly Diagnosed
« Reply #21 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
Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

cindyj

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Re: Newly Diagnosed
« Reply #22 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
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

moe

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Re: Newly Diagnosed
« Reply #23 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
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

LisaP

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Re: Newly Diagnosed
« Reply #24 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
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

MissMolly

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Re: Newly Diagnosed
« Reply #25 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
Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.

Keeping Up

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Re: Newly Diagnosed
« Reply #26 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 
dx Dec/08 - 5mm x 8mm AN
'watch and wait'

MissMolly

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Re: Newly Diagnosed
« Reply #27 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
Diagnosed 3/09 1.1cm tumor - 4/17/09 - had grown to 1.2
Age 61 - married with three adult kids
MidFossa surgery completed June 22nd
Mass General/Mass Eye and Ear - Martuza and McKenna
The tumor has grown back.  Now working with Mass General.  Dr. Loeffler feels I am not a candidate for proton beam.

moe

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Re: Newly Diagnosed
« Reply #28 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
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Sue

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Re: Newly Diagnosed
« Reply #29 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


Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

 


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