Author Topic: Denial?  (Read 13868 times)

qoatip

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Denial?
« on: September 03, 2009, 11:05:28 pm »
I was diagnosed in June of this year...here is my story up until about the end of July...  http://qoatip.blogspot.com/


I have been doing everything short of having the translab surgery recommended....diet, acupunture, relaxation, research...

sometimes I think I would rather let it grow as it would and take whatever toll it does, than have the surgery and deal with the possible negative outcomes.

I am pretty sure I have had this AN in my head for 20+ years....what's the rush?

Please don't judge me..I'm just really really scared.

Marla B.
2.5 cm AN diagnosed 6/09
Surgery at Virginia Mason, Seattle 2/10/10

suboo73

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Re: Denial?
« Reply #1 on: September 04, 2009, 04:11:23 am »
Maria,

Please take a deep breath and know you are part of the most FANTASTIC group of folks, who can say, been there done that.
I am here with my older sister, having had hearing loss for 12+ years and the local docs just told me i was 'getting old' - at 40 years old!  :o
[My sis had a diagnosis in a matter of weeks - i luv HER ENT!]  Long story short, i went to a third ENT at a major medical center, and asked for the MRI.  
No problem - i had a report inside one week, and the rest is history.

So - i did not necessarily 'choose' W & W, but here i am.  
Yes, the feelings are like a roller coaster - [i read your blog.]

I know others will chime in about the docs and facilities in your area.  This condition does require the 'experts' so continue your research and don't give up on finding someone you are comfortable with!

One more thought - your AN sounds medium size - have you considered radiation treatment?  I have researched alot regarding CK.  
I think you have time to make your decision - do you have any other symptoms besides hearing loss?

We are here for you.
Many thoughts and prayers to you, your spouse and extended family.

Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

leapyrtwins

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Re: Denial?
« Reply #2 on: September 04, 2009, 05:44:55 am »
Marla -

I perfectly understand your fear - I was fearful myself when I was diagnosed.  And in shock  :o - lots of us are.  Please know you are not alone in this.

Unfortunately, diet, acupunture, and relaxation wouldn't change the fact that you have an AN.  Letting your AN just keep growing and "take whatever toll it does" is not a wise idea.  If it gets too large, it can be fatal.

However, that is no reason to jump into treatment.  Watch and wait is something you can do as long as you have your AN monitored by periodic MRIs.  

At 2.5 cm chances are that radiation is not an option for you - but rest assured that surgery, while not easy, isn't a horrible option.  Lots of us have had it and lived to tell the tale.  Was it hard, yes.  Was it impossible, no.  Some of the things you mention in your blog - like not being able to drive for a few months - simply aren't true.  Everyone's AN Journey is different and some were driving again two weeks post op.  I was told I'd be off of work for 6 weeks - I returned part time @ 2 1/2 weeks and full time @ 4 weeks.  I think you get the idea.

Continue doing your research and feel free to ask us anything - or to lean on us for support - that's what we're here for.

Best,

Jan
« Last Edit: September 04, 2009, 05:49:07 am by leapyrtwins »
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

CHD63

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Re: Denial?
« Reply #3 on: September 04, 2009, 07:52:19 am »
Maria .....

Welcome to this Forum of wonderful, caring, supportive, "been there, done that," people.

I just read your blog and most of us can empathize with your agony, especially the wretched diagnosis and treatment-decision part of the whole mess.  I hope you will check back here frequently ..... it has helped so many of us to know that others have walked this same road and came out much better than we ever dreamed possible.

One of the very active members on this forum is from the Pacific Northwest and I know she will post here with her story and doctors in your area.

In the meantime, I think all of us will agree that having AN surgery is a very delicate surgery and must be handled by the most experienced and successful surgeon you can find.  I am sorry you had a bad experience with what I assume was a HEI doctor in LA.  That is unthinkable for a doctor to leave a message like that with anyone but the patient!  However, I would not rule out House as an option for treatment based on that one doctor ...... there are others there!  I would highly recommend my surgeon to anyone, Dr. Takanori Fukushima at Duke University in North Carolina ...... who has done over 1200 acoustic neuroma removals with great success.  See http://www.carolinaneuroscience.com/history.htm

I had retrosigmoid approach microsurgery for a 2+cm AN 18 months ago ...... see my signature at bottom of my post and I am doing well.

Please post again and let us know how you are doing and ask any questions you may have.

Clarice
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

moe

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Re: Denial?
« Reply #4 on: September 04, 2009, 09:00:13 am »
Hi Maria,
Yes, there are a couple of us here in the NW. I am one of those and live near Tacoma, WA.
Dr. Rubenstein is an excellent surgeon. Someone recently had a tumor removed by him with no complications.
I had Dr. Rubenstein do nerve graft to get my nerve re-generated, and he was excellent.
No comps from that surgery. Just taking a bit longer than I am happy with to get results (I want results yesterday/last year!).
My "signature" on the bottom of my name -don't freak out. My tumor was large and bloody and the face nerve had to be cut, but this is NOT the norm.
I will PM you with my phone no. if you want to talk.
Everything WILL be OKAY.
There are so many wonderful people on this forum. Ask away- no question is too trivial or silly.
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

Vivian B.

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Re: Denial?
« Reply #5 on: September 04, 2009, 09:10:29 am »
Hi Maria,

I completely understand how you feel. Being W & W for the past 6 months, I had the same thoughts as you did just last week. I have to say, I started off after being diagnosed in a very bad state of anxiety, and thanks to all the people on the forum and the research that they have provided, I came to terms with what the diagnosis is and what the treatments are like. I have not been treated yet, but while we cannot deny the fact that there will be some ups and downs after surgery or any other treatment,it has been done, it is  possible and it will be successful. It seems to me from everybody else's experiences that there is life after an AN.
During this journey you will have some overwhelimg days, and it's o.k. as long as you get back on the horse right away and you do not let your feelings drag on.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

Cheryl R

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Re: Denial?
« Reply #6 on: September 04, 2009, 10:20:15 am »
Dr Rubenstein did his fellowship at Univ of Iowa where many of us  go.     Think he left just about the time I was getting going with all this in 2001.         They do ANs on an almost weekly basis so has been at this for some time now.                Just had to add this when saw his name.
                                                            Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Jim Scott

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Re: Denial?
« Reply #7 on: September 04, 2009, 01:03:06 pm »
Hi, Marla (thanks to Jan's alertness on our initial mis-spelling of your name) ~

I'm pleased that you decided to join and post- and provide the link to your interesting blog. Much appreciated.   

Although your fears are perfectly natural (and we've all experienced them) you seem to have a firm grasp of the situation (an acoustic neuroma diagnosis), know what you need to do and what the risks are.  Unfortunately, as much as we all want a smooth, successful surgery and complication-free recovery, that simply cannot be guaranteed - by anyone.  However, focusing only on the possible risks connected with the AN removal procedure, a common reaction when facing serious surgery, can be paralyzing and unnecessarily depressing.  As you know, simply ignoring the AN, which is very likely growing, is not a reasonable option.  As it grows, your symptoms will become more intense and if left unchecked the tumor will disable you and, given enough time, kill you.  My neurosurgeon made this crystal clear to me during our initial consultation and I'm simply passing on his words, motivated by his 30 years of performing surgery on ANs.   Diet, acupuncture and good thoughts won't stop the tumor's growth -  but surgery can.  Yes, post-op complications can be tough but as others have commented, every AN patient is unique and one person's outcome - great or awful - doesn't dictate the same outcome for another AN patient.  I maintain that the surgeon's experience and acquired skill at performing AN removal surgery is a critical part of stacking the odds for a good outcome in your favor.  Well, it worked for me.  My AN was huge and I was 63 at the time of my surgery but did well, mostly thanks to a fabulous, compassionate neurosurgeon who knew what he was doing.

The insensitivity of the House Ear Institute doctor in divulging your tumor to your daughter was inexcusable.  I would have shot off a letter of complaint to HEI authorities, but that's me.  Still, they do have a good reputation but if you're totally put off of them due to that doctor's stupidity, then I'm sure you can find competent, experienced doctors closer to home who can perform AN removal surgery.  I hope you'll push past your fears, which we all have to do when we receive the AN diagnosis and learn about the post-op risks, and move forward with undergoing AN removal surgery.   Life is a series of risks.  AN surgery is one we would all like to avoid, but eventually have to face.  Most folks do fine and although recovery can be a bit slower than any of us like, we do recover and move on with our lives.  As long as it's addressed, an acoustic neuroma isn't fatal and doesn't metastasize.  Any post-op complications (which you may never experience) can be surmounted.  I hope you'll find the determination to deal with this and come out victorious, as I believe you will.  This website and the many folks that populate these forums will be here to help in any way possible.  We're not M.D.'s but we do have a wealth of practical experience with having (and losing) an acoustic neuroma.  I trust you'll consider us friends and visit here often with any questions or concerns you may have.  We'll always read and respond, no matter what it may be.  I look forward to reading more posts from you.  Stay strong.

Jim  
« Last Edit: September 05, 2009, 11:26:25 am by Jim Scott »
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.

leapyrtwins

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Re: Denial?
« Reply #8 on: September 04, 2009, 04:55:29 pm »
Okay, I know my eyes are bad without my glasses, but qoatip is your first name MARIA or MARLA?

I'm seeing MARLA, but it looks like everyone else is seeing MARIA.

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

CHD63

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Re: Denial?
« Reply #9 on: September 04, 2009, 05:10:10 pm »
Jan .....

Thanks for pointing this out!  I went back to her original post and enlarged it ...... it is definitely Marla, not Maria.

Marla, I hope you will post here and give us all a  ::) for not reading it correctly.   :'(

Clarice
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

leapyrtwins

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Re: Denial?
« Reply #10 on: September 04, 2009, 05:15:51 pm »
Damn!  My eyes are better than I thought  :)
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

mk

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Re: Denial?
« Reply #11 on: September 04, 2009, 07:21:20 pm »
OK, this reminds me of the thoughts that I was having when diagnosed with a 2.4 cm AN (which turned out to be more like a 3 cm - but this is another story). Mind you, I didn't have any symptoms at that point, other than slight numbness in the face. So when I first saw the neurosurgeon, I thought "why should I do anything, since it will only make things worse" and "this thing was in my head for more than 10 years anyway". Bad thinking of course, as I realized afterwards after doing a lot of reading. If you let these things grow things will get really really nasty.

At the same time, I was corresponding with another girl, Trish, (also a forumite), same age as me, who had been diagnosed with an AN of the same size. Fast forward, she had surgery and I had GK. She has done really well after surgery, overcame most complications and she went on to become pregnant and give birth to very healthy twin boys. As for me, up to now I have had no problems after GK, no additional hearing loss or any other side effects, and not a single lost day at work.

Where I am going with all this, is that even though things may look very bleak, they are not. There are many success stories in this forum (some of them very recent) with surgery or radiation. As you will see mostly everyone comes out of this ordeal pretty well, and with a whole different life perspective.

We can understand how you are feeling, as we have all experienced this initial shock. You will get through this just fine. In the meantime make sure to do your research and consult as much as you can.

Best wishes,
Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

ppearl214

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Re: Denial?
« Reply #12 on: September 04, 2009, 08:41:29 pm »
Hi Marla and welcome.

First, I moved this to this particular forum as it truly is part of an emotional impact of being diagnosed with an AN.  As many here have shared, we understand the emotions that are tied in with having this diagnosis come our way.  As you have been learning... there are good outcomes and sometimes not-so-good outcomes and we don't sugar coat things around here... but, what I can share is this....  as with any illness in life, "individual results may vary".  Stay strong in conviction. Stay strong in your beliefs. Stay strong in your research. Go with your gut.

Know that we are all here to lean on each other... lordy, do we lean on each other around here. But, what a terrific new "family" you have... as we all know what it is to walk in your shoes with having an AN. Stay strong.

Again, welcome.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

qoatip

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Re: Denial?
« Reply #13 on: September 04, 2009, 11:24:21 pm »
Thank you all for your comments...I don't know if you looked but I have been skulking around this site for about two months, so many of you have posted many times, I feel honored that you took the time to write to me...

Don't worry about mistyping my name, it's happened all my life..and yes, it is MARLA...

My personal experience with the outcomes of AN surgeries are the two local people I know, both of whom have facial paralysis, which scares the bejebeez out of me.

I work with the public, many of whom are brain injured and have no "filters" if you know what I mean.  I don't want to hear "what happened to your face" or "too bad about your face" every day at work.  I'd rather not.....

I know my outcome will be/ might be different, but it seems there is no way to tell, to guarantee, to pick the "best" surgeon, because none are perfect or have done the surgery without some failure.

The whole thing is sickening to me.

I am a strong person....for other people.  I can defend the rights and the boundaries and the lives of my friends and my community, I just don't think I can do that for myself.

I guess the sad scary thing is I think I would prefer the alternative....

Sometimes I feel like that is me whimping out, and then I feel like I can suck it up and deal with whatever the outcome is...then I talk to people on this site who are literally disabled from their surgery, either physically or emotionally, and I wonder how I would survive that way, and what quality would my life be.

I don't mean to sound melodramatic, but I haven't seen this conversation anywhere, and I don't know what the answer is.

Thanks for listening....

Marla

 
2.5 cm AN diagnosed 6/09
Surgery at Virginia Mason, Seattle 2/10/10

Kate B

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Re: Denial?
« Reply #14 on: September 05, 2009, 07:25:16 am »
Hi Marla,

As said by others, welcome to the forum.

Your tumor at 2.5 seems like a range which would give you the option of radiation or surgery.  In my research, UPMC said they administered GK up through 3 cm.  Others can answer, but I believe at 2.5 cm the same would be for CK.

It is hard not to generalize when you know two people with the same outcome. I suggest that you look at the data and statistics...Why? Because the likelihood, not the certainty, of the outcome will be in that range.  Side effects differ depending on the size of the tumor and/or its location.

You will find that the doctor's experience is paramount no matter which treatment you decide. Most agree upon the number of 100 or more such treatments.

Jim referenced House. I was looking for the info about it in this thread and didn't see it.  Did you go there for a consult?

All the best,
Kate





« Last Edit: September 05, 2009, 07:28:40 am by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

 


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