Author Topic: Why I'm bummed I took a while to make a decision  (Read 7924 times)

RachelSta

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Why I'm bummed I took a while to make a decision
« on: May 10, 2013, 04:30:36 am »
I was diagnosed with my AN in early March - it's relatively small (11 mm x 9 mm or so). I knew right away based on my own research that i wanted to have it removed. i saw two surgeons (Michigan ear institute and University of Michigan). one wouldnt discuss surgical method until i had sometesting done. i knew right away which surgeon i liked better, but felt i should wait to make a decision until i had the same discussion with both surgeons. i also sent my records to house. 

Two of the surgeons (House and U of Michigan) agreed i was a good candidate for middle fossa to save my hearing, which as of mid-March was "A" with 80% tone rwcognition and 70-80% word recognition. MEI recommended Translab despite my good hearing - I think they don't have the same good results with middle fossa.

I came close to going to house (surgery would have been 5/15), but ultimately decided I wanted to have surgery close to home. U of M has the same success and complication rates as House and I liked the surgeon, so I decided to have my surgery there, schedule for 5/29.

I intuitively "felt" more comfortable with the Dr. At U of M, but felt I had to do all the due diligence. Well, flash forward to yesterday when I was to meet the surgeon and neurosurgeon at u of m. They wanted to do an ABR and I asked for a repeat hearing test as I thought my hearing was worse. Well, my hearing is now category "d" with less than 50% tone recognition and 0% word recognition. So, I am having Translab surgery. I honestly already feel like I can't hear anything out of my AN
ear.

I feel like I had gone with my gut my surgery might have been a month ago and I might have had a chance of saving my hearing. I'm ok with losing my hearing, but would have loved not to do so.

Why am I saying this...well, I know ANs grow slowly and are generally not an emergency. However, I now know from experience your hearing can go ANY TIME if you have an AN, even if its not that big.

Rachel

CHD63

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Re: Why I'm bummed I took a while to make a decision
« Reply #1 on: May 10, 2013, 06:16:53 am »
Hi Rachel .....

Thanks so much for sharing your story.  It really does help others coming along the same path to know the agony that is involved in the decision-making process.

I hope you can be at peace with your decision now.  We never know how different our lives would be at many different points if we had taken a different fork in the road.  We cannot go back so we must adapt and go on .....  I hope that does not sound heartless .....  :-\

Acoustic neuromas seem to have a "mind of their own" regarding growth (or change of shape) rate.  Statistics are averages, not definite for each patient.

Many prayers for peace and acceptance as you go into surgery now.

Clarice

P.S.  You might want to explore a bone-anchored hearing device ..... I love my Ponto.
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

RachelSta

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Re: Why I'm bummed I took a while to make a decision
« Reply #2 on: May 10, 2013, 08:06:53 am »
Hi Clarice,
Thank you for your kind words.

I am at peace with my decision and am ok with losing my hearing (well as ok as I can be with actually losing hearing in one ear). I really posted this so others can know that your hearing can go at any moment. So, while ANs are usually not an emergency there can be some sense of urgency if you can still hear pretty well!

Being the type of person who researches everything to death, I have researched a BAHA and think I will probably go that route. However, with my surgery less than 3 weeks away when the decision is made to do translab I'm not going to have the implant at the same time as my surgery.

Rachel

kmr1969

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Re: Why I'm bummed I took a while to make a decision
« Reply #3 on: May 10, 2013, 11:54:19 am »
Rachel,

Good luck with your upcoming surgery.  I wouldn't be too hard on yourself, it sounds like your delay was for all the right reasons.  It's not like you were goofing off and just pretending something wasn't going to have to be done.

Of course, it is a good cautionary tale for others out there.  Let's face it, everything is so unique to each individual that it is impossible to really KNOW how to best proceed and how quickly.

My tumor was much larger than yours, but my hearing was very, very good, until the day of my surgery.  I wish I had asked my wife to say something nice in my right ear before they wheeled me into surgery.  SSD doesn't bother me too much, but I am homebody and it is problematic when in a noisy, crowded situation.  Still, it would have been nice for the the last words for that ear to hear to be something nice.  Actually, the anesthesiologist was on that side and probably the last words I do remember hearing was "I'll take good care of him" to my wife, and he did, so I guess those last words were OK.

Again, best wishes for a very successful surgery and an uneventful recovery.

Ken
2.7 cm AN diagnosed June 2012
Translab completed November 2012 at House Clinic
SSD; numbness on face and in mouth, plus poor taste buds, but happy with how I am doing so far

Stepphers

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Re: Why I'm bummed I took a while to make a decision
« Reply #4 on: May 17, 2013, 07:52:33 am »
I hope your surgery went well.

heavyknitting

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Re: Why I'm bummed I took a while to make a decision
« Reply #5 on: May 30, 2013, 11:19:34 pm »
I can sympathize. I feel like I should have done something sooner as well. I kept telling doctors that something was not right, that my right ear hurt, the tinnitus was really loud, but they all said it was stress related.  But why didn't I push to get it checked sooner?  I feel like if I had done so, if I was not so concerned over my unethical bosses, the fear of losing my crummy job and the fear of not being able to get another job that would not be as bad prevented me from taking care of myself.  I only have myself to blame so I bummed too...and scared. :(

Jim Scott

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Re: Why I'm bummed I took a while to make a decision
« Reply #6 on: May 31, 2013, 07:40:31 am »
Hi, Rachel ~

I trust your surgery was successful with no complications.

I was a victim of my own procrastination and ignored my increasing symptoms for years, including the loss of all hearing in the affected ear.  As a person blessed with good health all of my life, I couldn't conceive of having anything seriously wrong with me and I had an aversion to doctors and examinations because I so rarely had any reason to see a physician.  It wasn't until my symptoms increased to a point where I couldn't ignore them - and spurred by that and my wife's insistence - that I admitted something was wrong and made an appointment with our PCP. 

Long story short, after a false start, a 4.5 AN was discovered, pressing hard on my brain stem and surgery, ASAP, was my only choice.  I was very fortunate to find a neurosurgeon with decades of AN experience who did an outstanding job of de-bulking and, with the cooperation of an equally talented oncologist, had the remaining tumor radiated via FSR.  Although my hearing in one ear was gone for good, my surgery was a success (all symptoms immediately disappeared) and I suffered no complications.  The radiation was uneventful with no side effects.  That was 7 years ago.

Today, I'm doing great and enjoying my life.  However, I would enjoy it even more if I could hear in both ears.  I realize that it was my foolish decision to ignore my diminishing hearing (over about 5 years) so I have no one else to blame.  I relate my experience as a warning to others not to ignore symptoms and to you as a reminder that many of us suffer from procrastination (for any number of reasons).  That doesn't change anything but I wanted you to know that you are not alone in wishing you had acted sooner on your symptoms.  My hope now is that your surgical outcome is similar to mine.   

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

james e

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Re: Why I'm bummed I took a while to make a decision
« Reply #7 on: May 31, 2013, 12:24:25 pm »
If it helps at all, my doctor told me when the nerves are going down hill that fast, nothing would have saved them. You would have lost your hearing anyway. Translab is a safer approach to save your facial nerves, and a BAHA is a wonderful technical device. It sounds like you did all the correct things...interview several doctors, make a decision based on the facts. You did the right thing. Pat on the back for you. Same thing happened to me and I am happy with my outcome.

James

PaulW

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Re: Why I'm bummed I took a while to make a decision
« Reply #8 on: May 31, 2013, 03:31:48 pm »
In 2004 a friend of mine underwent surgery for an AN
She had been in Watch and Wait for 18 months.
Her tumour was 2cm, she was a fit 34 year old.
She had the tumour removed after a 13 hour surgery, and suffered from complete facial palsy
She died 3 weeks after the surgery from complications caused by an allergic reaction to the anaesthetic.
The allergic reaction caused her liver to shut down. The long surgery had made the risk of complications from the anaesthetic much higher.
It was through this tragedy that I learned about the existence of acoustic neuromas.

When I started losing my hearing in late May 2010, I knew straight away that it could be an AN.
And after my previous experience with AN, I was going to do what ever I could to keep my hearing, facial nerve and life intact.
So surgery was far from my favourite option.

Everyday my hearing got a little worse.

I ended up leaving Australia where I live, as at the time the country did not have GK or CK..
I flew to Germany to get CK

The time from noticing diminished hearing to CK treatment overseas was just under 2 months.

I remember walking out of the European Cyberknife Centre, and being pretty deaf in my AN ear. I had pretty much lost the ability to hear the direction of where sound was coming from.
I felt that I had tried everything to save my hearing but it was too late.

Much to my amazement, my hearing slowly came back.
Now 3 years later my hearing remains within the Normal range (Gardner Robertson grade 1)
Its not as good as my good ear but still pretty good.

I know there is a lot of evidence to support W&W and the arguments for W&W are pretty compelling.
Getting the AN sorted quickly however, allowed me to get on with my life, and that was very uplifting.

It is my understanding that hearing loss is not necessarily one way. It can fluctuate quite considerably for some people while in W&W

I certainly feel that my decision to act quickly has helped preserve my hearing.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

prisca

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Re: Why I'm bummed I took a while to make a decision
« Reply #9 on: June 01, 2013, 03:58:26 pm »
Thanks for sharing your story.  Last week I went to an otologist due to a feeling of fullness in my right ear and although I didn't think I had a hearing loss, the audiological report showed a moderate sensory neural hearing loss  from 250 to 1,000 Hz in that ear.  Because I had had some brain damage 20 years ago from a car accident, the doctor decided that the hearing loss must be due to that (damage on left side, hearing loss on right) and told me to return in a year for another audiogram.  I instead faxed a copy of the audiogram to a center that was listed in the resources and am awaiting a call back from them for an appointment.  I was brought up not to question doctors and was feeling sort of like a hypochondriac for wanting an MRI to either rule an AN in or out, and your post made me feel better.  Good luck!

PaulW

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Re: Why I'm bummed I took a while to make a decision
« Reply #10 on: June 01, 2013, 10:39:09 pm »
First of all without creating a panic.
Acoustic Neuromas are relatively uncommon.
There are lots of things that can cause hearing loss, some explained, and some not.
So chances are that you wont have one.
Even if you do, its the most boring brain tumour you can have. It rarely kills, and if treated by experts the outcomes are often extremely good.

However you have ticked more than one box for symptoms for an AN.

1. Sensineural Hearing Loss...
This demonstrates there is nerve damage or some form of non functioning of the nerve or cochlear.
So its probably not wax, a middle ear infection, or otosclerosis, or allergies.

2. Full feeling in the ear. Another AN symptom
This is caused by a very small branch of the facial nerve being upset for some reason.
Again this could be a lot of things, nearly always not an Acoustic Neuroma, but the fact that you have this as well is a little suspicious.
Acoustic Neuromas typically press on the facial nerve, giving this fullness sensation.

3. Audiogram that dips in the middle.
People with AN's have all sorts of hearing loss, but audiograms that dip in the middle are a little unusual for most things, and are the most common form of hearing loss with AN's

Due to the benign slow growing nature of AN's many go undetected for many years, and many people probably carry them to their grave without ever knowing or impacting their life greatly.

Many doctors these days are open to discussion on research found on the net.
At the end of the day the more information you can give your doctor the better chance he has of giving you a correct diagnosis.

Health information on the internet should never be used in isolation, and should be discussed with your doctor.
If you feel that you are not being heard, you should not feel bad about seeking another opinion.

Getting an MRI can't hurt, and it will put your mind at rest.
 
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

prisca

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Re: Why I'm bummed I took a while to make a decision
« Reply #11 on: June 03, 2013, 05:16:52 pm »
PaulW,

Thanks for your reply.  I'm not in panic mode.  It is what it is, I just want more information.  However, I am a teacher of the deaf and although my audiology classes were 40 years ago, the fact that everything up to and including the cochlea is working fine does lead me to suspect an AN.

Derika

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Re: Why I'm bummed I took a while to make a decision
« Reply #12 on: June 28, 2013, 01:14:31 pm »
Hello Rachel, I am in the exact same stage as you were back in may and going to the same dr. I think. Dr. Arts of U of M. I am in wonder how everything went with the surgery and your recovery. I wish you the best of luck and look forward to hearing about your recovery experiences. Take Care Derika.

RachelSta

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Re: Why I'm bummed I took a while to make a decision
« Reply #13 on: June 29, 2013, 04:41:20 am »
Hi Derika,
I'm actually had my surgery with Dr. El Kashlan and Dr. Thompon. However, I've also heard great things about Dr. Arts (actually heard more about Dr. Arts than Dr. el Kashlan). All three neurotologist s at Uof M are great doctors. Dr. Thompson is an amazing, nationally respected neurosurgeon.

My surgery went great - my tumor, while not big (1.6 cm at surgery) was filling my IAC. They got out the whole tumor and I had zero facial motor nerve affect - woke up with 100% function. I had some dry eye for a week or so, but that's it. One month out from surgery I'm doing great. My balance is great, I'm driving and I started exercising this week. I get tired and need to sit down and rest a little during the day, but that's normal. My incision looks great and they only shaved about a one inch strip of hair above my ear for the surgery.

I saw your post about .your age - I'm not that different. I'm 42 years old and am a single mom to 3 kids for 10 out of every 14 days. Mykids are younger than yours (11, 10, and 6).  I am in excellent health and really good shape (or I was a month ago).

Are you in the detroit area? There are a group of AN people (mostly women) meeting for lunch at bd's in novi on July 20 at noon. Ages ranged from mid-20s to probably 50. I'm not sure if Im going to make it this time, but I went last time they met and its an extremely nice group of women and it made me feel so much better to have met some people who've been through this.

Oh yes - one more thing. I did also get an opinion from Michigan Ear and from House. I did not go with Michigan Ear because when my hearing was still excellent the Dr wanted to do Translab. Both house and u of m said mid- fossa. Every reason the dr at michigan ear gave for Translab both other surgeons with whom I spoke completely disagreed. I really liked dr. el Kashlan and felt comfortable with the u of m team, so I went there.

Feel free to message me if you have any other questions.
Rachel

nftwoed

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Re: Why I'm bummed I took a while to make a decision
« Reply #14 on: June 29, 2013, 09:20:47 pm »
Hi Rachel;

   Sounds like a pretty good outcome after all. I doubt one month would have made much difference re, your hearing.
   I'd like to add Mid Fossa ( MCF ) is a pretty demanding surgery of the neuro and is quite technical in detail. It's likely you'll never experience a regrowth with Translab either. There's only a facial nerve left.
   It's good to read your balance is compensating well, which is as per most cases if the other ear is healthy.

 


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