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Author Topic: Just when I was relaxing .....  (Read 58719 times)

Melinda_australia

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Re: Just when I was relaxing .....
« Reply #15 on: February 27, 2011, 09:07:30 am »
Dear Clarice,

Oh love..
I am so sorry to hear this has happened again.
I wish I could advise you with my experience,
As you know I am new to having an AN,
I offer you my love and support and prayers, from Australia!
Do get some more doctors opinion's
Keep you chin up!
So many prayers are coming you way!  :-*

Big Hugs and Kisses
Melinda  :-*
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Rivergirl

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Re: Just when I was relaxing .....
« Reply #16 on: February 27, 2011, 10:12:05 am »
Clarice,
Sorry for your regrowth, going through it once is bad enough but again, just not fair, hope you can find the right path to take and it is successful.
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Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

leapyrtwins

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Re: Just when I was relaxing .....
« Reply #17 on: February 27, 2011, 10:19:43 am »
Clarice -

I'm so sorry to hear this.  I wish I had answers to your questions about radiation, but I don't.  Steve's suggestions are wonderful though; definitely take his advice.

Know that we are thinking of you and hoping for the best possible outcome.

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

yardtick

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Re: Just when I was relaxing .....
« Reply #18 on: February 27, 2011, 08:46:01 pm »
Clarice,

So sorry you are having to deal with this yet again.  You are a very strong, educated woman, and wisdom is another fine characteristic that you posses.  Gratefully, you have shared your strength, education and wisdom with all of us on this forum.  You have supported so many of us when we needed support and now it is our turn to support you.  

Take care,
Anne Marie
« Last Edit: March 01, 2011, 09:09:09 pm by yardtick »
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Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

CHD63

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Re: Just when I was relaxing .....
« Reply #19 on: February 27, 2011, 11:36:24 pm »
Melinda, Rivergirl, Jan, and Anne Marie .....

Thanks so much for all of your love, care, and prayers.

I did not know about this Forum until after my original surgery in 2008 so I did not have the much needed support during those awful weeks of diagnosis, decision, and treatment.  As a result, I have made a conscious decision to do what I can to ease the fears of those who are newly diagnosed or struggling with some of the potential after effects.

Little did I know that I would become a recipient of the tremendous support from you wonderful people!  We are all in this together and that is what makes it bearable now!

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

Mickey

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Re: Just when I was relaxing .....
« Reply #20 on: February 28, 2011, 08:22:07 am »
Hi Clarice! I just wanted to wish you the best going fowards. Your a strong person who has been so helpful to many people in our AN community. You have many good vibes coming your way. Keep positive as you are to whatever you feel you need to. Everythings going to be allright. Prayers and Best wishes, Mickey
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cindyj

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Re: Just when I was relaxing .....
« Reply #21 on: February 28, 2011, 08:49:13 am »
Hey, Clarice...wow, so sorry you're having to deal w/ the stress of this again...I have no advice, but agree w/ Steve's comment to "stay cheerful" as I know you will :-*

Cindy
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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

ombrerose4

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Re: Just when I was relaxing .....
« Reply #22 on: February 28, 2011, 09:14:23 am »
Dear Clarice,

I am so sorry to hear your news. It is something all of us hope will never happen again and it makes me feel that all our post op MRI's that say "normal post op changes" may not be quite true. You have supported me so many times and I just want to let you know we are all here for you. You have such great insights and so much knowledge, I know you will make an educated decision. I am sending you a hug and a  :) Please keep us informed-we care very much!
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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

BostonBill

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Re: Just when I was relaxing .....
« Reply #23 on: February 28, 2011, 07:39:05 pm »
Hi Clarice,
I truly wish I had some great advise or point you in the right direction. I am sure anything I could offer would be redundant.
So I will send my best wishes and keep you in my thoughts and prayers!
Be well,
Bill
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Diagnosed Dec 21, 2010, 1.75 x 1.75cm plan is for retrosigmoid removal scheduled for June 15th at MGH by Dr Barker & Dr Lee. Putting off so I may enjoy my sons senior year varsity hockey, lacrosse seasons and graduation. That and our annual trip to Cancun in May.

CHD63

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Re: Just when I was relaxing .....
« Reply #24 on: February 28, 2011, 10:19:28 pm »
Mickey, Cindy, Lauren, and Bill .....

Thanks for being here ..... not only for me at the moment, but for all of the others out there being diagnosed for the first time and scared to death.  I am not in the panic mode I was the first time, just unhappy to have to be dealing with the decision again.  Most of us can agree that making the decision for treatment (or watching and waiting) is the most stressful part of this whole thing.

Things are definitely looking up as I move farther along this course of gaining advice and opinions from all of you, as well as some expert medical advice.

We are in this together ..... like it or not!   ::)

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

SML

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Re: Just when I was relaxing .....
« Reply #25 on: March 01, 2011, 10:06:04 am »
Clarice,

I'm really sorry that you are going through this again. You are a very strong woman and you certainly have our support and prayers as you continue with your journey.  :-*

Scarlett & Rich
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SML(Scarlett)-Massachusetts
1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid 3/18/09 at MGH in Boston,MA.
Dr. Barker - Neurosurgeon, MGH - Dr. Lee - Neuro-Otology, MEEI
no facial issues, SSD right side, balance issues to work on.
Outstanding Surgeons, I'm very happy with the results.

pjb

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Re: Just when I was relaxing .....
« Reply #26 on: March 01, 2011, 01:14:14 pm »
Clarice I am so sorry to hear of your news I have not been on the forum I am having problems with an upcoming different rare surgery for my daughter (My special caregiver) .. You have been such a help to all of us on this forum and I feel so bad you to have to go through this again.. I am in a W&W mode also and hoping my residual does not grow.. We hope that the first time we go through the surgery that it is gone and then to find out it is still there is very upsetting.. I hope you will decide what will be the best approach for you and maybe you will inspire me to follow your decision because right now I am very confused as what approach I should take..

Best Wishes,

Pat
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Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

kenneth_k

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Re: Just when I was relaxing .....
« Reply #27 on: March 01, 2011, 01:32:49 pm »
Hi Clarice.

I truly hope that everything works out fine.

Best regards, Kenneth
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jerseygirl

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Re: Just when I was relaxing .....
« Reply #28 on: March 01, 2011, 02:51:21 pm »
Dear Clarice,
 
So sorry you have to live through this  nightmare.  I really think everything will be fine because your original tumor, although fast growing, was medium sized and did not present an impossible situation at the time of its removal.   Therefore, any residuals are not big yet and are easily removed. Question is where are they and how big are they now. You can request a copy of your radiologist's (MRI) report, if you didn't yet and it should be specific on both accounts. My guess is that the residual is around the hearing nerve. In an attempt to save it, the surgeon left some cells there. Was the tumor removal considered complete and total or where there any  questions?

Sending big hugs,

        Eve
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Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Mei Mei

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Re: Just when I was relaxing .....
« Reply #29 on: March 01, 2011, 07:49:45 pm »
Dear Clarice,
Sorry to hear about this "excitement" in your life.   You were just relaxing and settling in for a nice future.    I would suggest Dr. Konziolka at the University of Pittsburgh.   I have his email address if you'd like it to send your reports.   I have it from years ago when I was contacting to take my cousin over there.   It's worth the trip.   Someone in my local support group went there and was very satisfied.
Hugs to you, Clarice...you are in my thoughts and prayers.   My email is posted on my information if you want to write.

Mei Mei
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1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh
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