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Author Topic: A Long absence, and unwelcome news.  (Read 5990 times)

allegro17

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A Long absence, and unwelcome news.
« on: December 18, 2009, 02:20:31 pm »
First, I want to say a way overdue hello to everyone, new and seasoned alike.  I have a lot of catching up to do!
2009 was a very difficult year for me.  The stress of dealing with the AN diagnosis, deciding on a treatment option, going through surgery and recovery, and then the myriad of insurance nightmares that have ensued.  It has all been quite overwhelming, to the point where I consciously chose to try and ignore all of the difficulties instead of attempting to work through them, and so I avoided dealing with any and all things related to AN.
I went for my first post surgical MRI on Wedenesday, and the MRI showed another AN forming, on the other side :(  I am now officially NF2, and the nightmare continues.  So, I am reaching out here for support and advice again, I hope!  I went through a major breakdown a few days ago and have since been able to reamin moslty calm.  But, I am pretty scared, and know I am facing a huge emotional rollercoaster ride.
Anyway, that's the news.  I have to say, it feels good to be making the move to be back in touch!  But, like everyone said to me for the first time about a year ago, I wish it could have been under other circumstances.

Love and hugs to all,

Laura
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another NY postie

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Re: A Long absence, and unwelcome news.
« Reply #1 on: December 18, 2009, 02:27:32 pm »
Laura,
A big hug right back to you!  I am so sorry that you have just been dealt this blow.  I know that after my decision to have surgery, I just wanted it to be done and over with and sto tart recovery so I could just move on from this thing that had completely taken over my life.  To hear that you have another one has to be devastating.  But, you have come back to the right place - you will receive all the love and support that you need and there are plenty of members of this group who have NF2 and can provide you with help, solutions, and experience.  Hang in there...we are all here to hold your hand (virtually) as you continue this journey.
Cheryl
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5 mm lateral IAC (impacted?) diagnosed 6-09-09
middle fosa 9/23 HEI - Brackmann/Schwartz
all tumor gone, facial perfect, no ringing
SSD on right side - Rockin' and Rollin'

leapyrtwins

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Re: A Long absence, and unwelcome news.
« Reply #2 on: December 18, 2009, 02:31:38 pm »
Laura -

I am so very sorry to read your post.  You have been through a lot and to have a diagnosis of NF2 on top of everything else must be very stressful and disheartening.

Please know that you are in our thoughts and prayers and that we are here to support you.  As Cheryl noted we have some wonderful members on the Forum who are also NF2 and they will be a great resource for you.

Please lean on all of us,

Jan

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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

Pooter

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Re: A Long absence, and unwelcome news.
« Reply #3 on: December 18, 2009, 02:38:49 pm »
Oh my gosh, Laura!  I'm disheartened by your news as I'm sure you were when you were given the diagnosis.  It's understandable, almost expected, that you had a breakdown a few days ago.

Was it Dr V or someone else who you followed-up with?

Please know that you're in our thoughts and prayers and if you need ANYTHING, let me/us know...

Kind regards,
Brian
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Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Jim Scott

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Re: A Long absence, and unwelcome news.
« Reply #4 on: December 18, 2009, 02:50:03 pm »
Hi, Laura ~

I almost hesitate to type 'welcome back', considering the news that brought you here, again.  Being diagnosed as NF2 is clearly disturbing and if you had an emotional breakdown immediately after receiving that news, it's totally understandable.  I doubt I would be able to remain completely calm and composed were I facing the same diagnosis.  Who would?

Indeed, 2009 has not been 'your' year.  I offer you my empathy and the support of many, many people that want to reach out and support you in whatever way we can.  I know that with prayers and virtual huggles, you'll get through this latest challenge and I want you to know that we'll be with you every step of the way, if you'll let us, as I trust you will.  Try to remain strong.

Jim
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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.

ppearl214

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Re: A Long absence, and unwelcome news.
« Reply #5 on: December 18, 2009, 02:57:55 pm »
Laura

Like Jim... great to "hear" from you... but lack of words for this update. I'm sorry to hear this news. What I can share is this... having the true honor of meeting you in person, to see your mental strength, your resolve... and heck, you know you have apple dumplin's in the wings to help the cause... we're here for you. I know all the extensive homework you have done in the past.. and you have left no rock unturned.... so, know that I and WE are here for you (I know you already know that...) and you know you've got my huggles... and please hang in there. I'll follow for updates... you know it.

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

nancyann

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Re: A Long absence, and unwelcome news.
« Reply #6 on: December 18, 2009, 03:13:37 pm »
Laura:  I truly echo everyone's sentiments.  This has to be so emotionally draining....   You're in my thoughts & prayers.
Always good thoughts,  Nancy
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2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

NancyMc

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Re: A Long absence, and unwelcome news.
« Reply #7 on: December 18, 2009, 03:45:33 pm »
Well, this just rots my socks.  I know you're going to run this marathon just like all the others, though, and come out triumphant.
It totally sucks that you have another one to deal with.  You know the routine, so it will be a familiar process, and you'll be good as new, but it is tiresome to put something behind you and then have it pop up in front again.
I wish the insurance companies could be more compassionate than they typically are, but I'm glad you have insurance. 
Hang in there.  I was wondering about you.  I figured you had run off into the sunset.  Sorry you're back to begin again.
I'll be watching for your updates.
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Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

CHD63

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Re: A Long absence, and unwelcome news.
« Reply #8 on: December 18, 2009, 06:14:44 pm »
Laura ......

Words will not come to express what I am feeling ..... maybe unfair is the closest.

You know that this group of people are the most compassionate and understanding of what you are facing ..... and I might add, wonderful pray-ers!

You are in my thoughts and prayers.

Clarice
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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

allegro17

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Re: A Long absence, and unwelcome news.
« Reply #9 on: December 18, 2009, 07:39:24 pm »
Thanks everyone, truly.
Pooter, I followed up with my doctor here in Houston, Dr. Williamson.  I just adore him, which is comforting, especially after the nightmare that my experience at SBI turned into.
I will go on Monday for a full spinal MRI to check for any additional spinal chord tumors that might be lurking, which I have been told .  After that, I think it's just going to be watch and wait for a while, with MRIs every 3-6 months or so to monitor growth.  I will start posting my usual myriad of treatment related questions on the boards shortly :)  Right now just trying to remember to breathe and enjoy each day in every way I can, one step at a time.
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suboo73

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Re: A Long absence, and unwelcome news.
« Reply #10 on: December 18, 2009, 07:57:09 pm »
Laura,

Hello again - so glad you are posting your updates on the Forum.
I didn't realize you had such a time at SBI, and now this diagnosis.

As others have said - stay strong and know that we are here for you.
My thoughts and prayers are also with you.

Please continue to keep us updated.
Sincerely,
Sue
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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

sgerrard

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Re: A Long absence, and unwelcome news.
« Reply #11 on: December 19, 2009, 12:41:24 am »
Quote from: allegro17 on December 18, 2009, 07:39:24 pm
I think it's just going to be watch and wait for a while... Right now just trying to remember to breathe and enjoy each day in every way I can, one step at a time.

There is a new post in the NF2 section by Shelley, who has been doing exactly that since 1993. :)

Laura, all of us were impressed (and somewhat astonished) when you ran in an Ironman competition in August. If you can do that, you can handle this. As for more treatment, I would go by symptoms rather than size, and wait until it seems like you need to do something. It's just a 2mm one, so you will have some time. It is a setback for sure, but not a show stopper. I think there is still reason to be optimistic about it.

On the other hand, you are certainly entitled to be upset about it. Good grief! I hope you find the support of your friends here on the forum helpful. Do take care, and try to enjoy the holiday season as best you can.

Steve
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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.

Cheryl R

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Re: A Long absence, and unwelcome news.
« Reply #12 on: December 19, 2009, 09:25:34 am »
Laura,  I am sorry to hear of another going thru what I have.    It does make this whole AN business more of a challenge.    My AN on the other side didn't show up till 2 years after my first AN surgery.     I then had the facial neuroma on the same side as the first surgery.     The one on the good side did start growing in time and making me almost all deaf and would be getting a cochlear implant.  It was a very good surprise when my hearing returned  with my surgery but is not perfect but good enough to get by.             
  You have to make sure and be with a dr who really knows NF2.     I am lucky that mine has had several.  I go to the Univ of Iowa.      I also have talked to Dr Slattery at the symposiums so feel I have had their "second opinion"       Their sessions at the symposium have been very good in talking about NF2.                       It still varies in how a dr feels about radiation with NF2.    Some can be for it and some aren't.      House has a 75-80% success rate with doing mid fossa to save hearing.             I waited till I was almost deaf as did not want to give it up.    It is a hard choice and I would have had surgery earlier if I knew how mine would turn out.             I am much older than you.     That can make a difference too.         I do pretty well with no balance nerves but not enough to go back to work as a hospital nurse and running up and down the halls.              But life is "normal" and just have to watch some things more than I used to.                            Life is all day by day and not fun knowing that my future could still throw me a whammy and have another AN return.           I feel I have a guardian angel who wanted to make sure I got to hear my 2 little granddaughters!                           I have been lucky to have no other tumors.     I had my spinal MRI again last spring and none so hope that continues.      One does have to keep watch for more than just the AN.                        It was very hard to get the news that I was NF2 but one does adjust in time and life goes on.   
     I hope you can still enjoy the holidays and know that you have a place here to talk about how it is going for you!         A big hug to you and I am thinking of you!                          Cheryl R
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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

texsooner

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Re: A Long absence, and unwelcome news.
« Reply #13 on: December 19, 2009, 12:19:10 pm »
Laura, I'm with Steve...anyone that has the will and determination to do an Ironman triathlon like you did (just a few months after your surgery), has what it takes to get through this as well. I'm still amazed at you doing that, and doing it very competitively to boot. Heck, I'm stressing over just being able to do a half marathon in a few weeks.

I know the news of another tumor is not what you wanted to hear, but it sounds like it's small enough not to cause you problems for awhile, giving you plenty of time to figure out the best treatment. You'll continue to get a lot of support here, so fire away on any questions you have, as you know you will get good responses from the fine folks here.

You'll be in my thoughts and prayers...stay strong and positive and keep us posted.

Patrick
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3.5cm left side AN; 11 hour retrosigmoid surgery 8/11/08 @ Memorial Hermann, Houston - Texas Medical Center with Drs. Chang and Vollmer; home on 8/13/08;
SSD(w/tinnitus); dry eye; Happy to be here and feeling good.

ombrerose4

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Re: A Long absence, and unwelcome news.
« Reply #14 on: December 19, 2009, 12:24:08 pm »
I am so sorry you have been dealt this blow, but from what I hear on the forum you are tough and I know you will get through this. Just remember everyone is here for you to listen, laugh, cry, tell silly jokes and help you through in any way we can. All the best, keep us informed.
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Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010
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