Author Topic: Diagnosed Yesterday  (Read 4796 times)

rebecca0110

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Diagnosed Yesterday
« on: March 24, 2012, 07:19:06 pm »
Hi everyone.  I've been dizzy for 4 months, was diagnosed with AN yesterday, and it's all still feeling very surreal.  Never in a million years would I predict I'd have a brain tumor!  It sounds REALLY weird when I say that.  One thing that's good, in a way, at least it's nice is that it has a name.  Also, some very lovely people also have it, and it's really nice to see people on this site support each other.  Looking through the posts has already made me feel BOTH more at ease and more fearful.  At this point I'm really afraid of losing my hearing and a little sad at having to shave my head, or part of it -- I just grew it out again and it's nice and long.  I'm curious, how did you tell people?  Did you post it on Facebook?  Anyway, I look forward to reading more of your posts, about everyone's ideas, worries, experiences, etc.  So, I thank you in advance for your advice and kind words.  It really is nice there is a community already established where I can find information and opinions.  I'm starting grad school (urban planning/landscape architecture) in the fall and currently finding a new place to live because my husband is divorcing me.  It's a really tough spot, but hopefully this site will help provide a little grounding I need right now.   
Diagnosed 3/22/12
AN 1.6cm x 1.3cm x 0.9cm, right side.
Dizzy and getting a little freaked out.

LakeErie

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Re: Diagnosed Yesterday
« Reply #1 on: March 25, 2012, 08:33:17 am »
Sorry to hear of your diagnosis, but the shock does wear off as you learn more about the reality of having an AN. You have options for treatment and conferring with medical professionals will make them clear. The information available from the ANA is something you should request. This forum is available to you as you move forward in the process of determining your treatment and then recovering after it. I am sure this board will assure that there is life after an AN and I can say that after just 5 months from surgery for a large AN, I am fine and living normally as my loss of hearing and other minor deficits do not really bother me at all. Keep coming back here. Good Luck
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

TJ

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  • 1.2 cm AN right side, CK November 2010
Re: Diagnosed Yesterday
« Reply #2 on: March 25, 2012, 10:32:51 am »
Rebecca110

You may not have to shave your head.  As said there are many options in dealing with you AN.  Your decision a long with the doctors advice should be made depending on where the AN is located and it's current size.  Smaller Ana's usually considered under 3.5CM can be treated very effectively with radiation.  So although this is scary news to you, take a breath, do your homework and make a decision that you are OK with.

Best of Luck

TJ

pjb

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Re: Diagnosed Yesterday
« Reply #3 on: March 25, 2012, 01:15:34 pm »
Hi, I do not post much do not have good advice or smarts street smart not book smart but yours I just had to you are going through a lot right now just take a deep breath and research as much as you can read the good and bad but the bottom line is pick the best team no matter what you choose I cannot stress that enough. As far as the hair I cut my very short thought they were going to and there was no reason for me to do so was upset but I should have asked. They usually cut a small area for the incision and it is very easy to have the rest of your hair cover it so do not do anything as drastic as I did. Ask lots of questions and do not ever feel funny in doing so this is your head ask as many as you can even if it seems silly no question or great doctor would think that...Good luck with whatever course of treatment you and only you choose.

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

Jim Scott

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Re: Diagnosed Yesterday
« Reply #4 on: March 25, 2012, 01:44:21 pm »
Hi, Rebecca ~

I'm sorry about your AN diagnosis but glad you discovered the ANA website and decided to make use of the Discussion Forums.

First: As 'pjb' stated, there is no reason to shave your hair off, just a small strip that is easily covered.  Of course, that assumes you opt for AN surgery and not radiation, instead.  How you tell family and friends is, of course, totally up to you.  A Facebook posting spreads the word quickly, if that is how you want to do it. 

We look forward to your posts; including the size of your AN and, if you chose, your location.

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.

CHD63

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Re: Diagnosed Yesterday
« Reply #5 on: March 25, 2012, 04:05:49 pm »
Hi rebecca0110 .....

Just adding my welcome to this group of caring, supportive friends.  Sorry you have an AN, but so glad you found us.

You have already had good responses so I will just add, take your time to do your research and get several opinions.  And, I agree, know one will know you have had surgery if you go that route, because most surgeons only shave a very narrow strip and it is easily covered by your remaining hair.

It sounds like you have a lot on your plate with a divorce and upcoming graduate school.  Many thoughts and prayers.  Let us know how we can help.

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

stephSF

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Re: Diagnosed Yesterday
« Reply #6 on: March 27, 2012, 03:06:45 pm »
Hi.  And welcome...and there are incredibly supportive people here!  If you have surgery, the hair shave is so minimal usually that it's no big deal.  Don't go and shave your head!  You have enough going on.  Once you understand more about your situation, you will find a way to tell the people y want to.  As we all learned to say " brain tumor"..... It is always s ray for anyone hearing it, so you will learn to say "benign" right away too.  I have to go get my kids, but I am here if you have any questions.  I am 9 weeks post trans lab, SSD, and am doing fantastic!  Really.
Steph
1.6 cm AN Translab with Dr.'s Friedman and Shwartz with HEI on 1-25-2012.  I am doing great!  Surgery saved my life :).   Be brave, have a great attitude, and hire the best surgical team!!!!

ksiwek

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Re: Diagnosed Yesterday
« Reply #7 on: March 27, 2012, 03:20:12 pm »
Hello there...and welcome to the forum.  It sounds like there is a lot on your plate...coming from one patient to another who had a lot going on at the time of diagnosis, take a deep breath!  Allow yourself the time to do your research, get multiple medical opinions and ask a lot of questions of both your medical teams and previous patients.  Also, find those of your friends and family that you can rely on for support.  You will likely go through many different emotions as the diagnosis becomes more real: fear, anger, sadness, anxiety, etc...

Oh and depending on who does your surgery of course, they don't shave near as much hair as you'd think!  No need to shave your head  ;D

Good luck to you!  Keep us posted...

Kris
Translab 6/4/10 for 4+ cm left AN.  Drs Friedman and Schwartz at HEI saved my life!
BAHA surgery on 10/7/10 with Dr Battista of Chicago Ear Institute (Oticon Ponto Pro)

BeckyMax

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Re: Diagnosed Yesterday
« Reply #8 on: March 27, 2012, 06:16:29 pm »
Hi Rebecca, I'm Becky.....recently diagnosed and opting for watch and wait at the moment.  If treatment is required later I suspect I will chose cyberknife.  I wanted to comment on your question about Facebook, think carefully about this. Once it is out the, its there, although the ANA community understands this condition, other don't.  I have not put anything on Facebook simple because I do not want future employers to stumble on my information and think that hiring me will result in a liability ti the company.  Maybe I'm paranoid, but my current employer seems the same way and I've only been on this job a few months.  I've chosen to personally tell only those that need to know that way I have control over how the information is shared.  As much as i want support from all my Facebook friends, the truth is, I haven't seen some of these people in years and other have friended me after just meeting them, yet I would not want to share my medical history with them.  Just a thought.  I can come here for the support I need, and to my immediate family and friends that i have chosen to share with.
7mm x 5 mm Left AN, diagnosed 2/9/12
7mm x 6 mm  8/12
9mm x 7 mm  8/13
Cyberknife 12/13