Author Topic: Newbie- 31 years old, just diagnosed 10/15  (Read 16088 times)

lawmama

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Newbie- 31 years old, just diagnosed 10/15
« on: October 18, 2009, 08:40:49 am »
Hello everyone.  I'm brand new to this diagnosis and to this board.  I'm a 31-year old mother of two small children, and I'm in my next-to-last year of law school.  I was suffering from severe dizziness, vertigo, and headaches (no hearing loss that I can tell).  My symptoms were making it difficult for me to concentrate and focus.  When I first went to see my doctor, I had already "diagnosed" myself with either blood-sugar issues or possible anemia.  I was a little put off when my Dr immediately sent me for an MRI just to "rule out the bad stuff first."  Within just a few days of my first appointment, I was diagnosed with a 9mm by 6mm acoustic neuroma on my left side.  I will see an ENT on Tuesday, but I'm assuming I'll just be referred to a neurologist.  I'm still doing research and emotionally processing this.

I think my main concerns are the possible effects this will have on my life.  I've gone through 8 years of college, and since law is a very service-oriented profession, I'm terrified that facial paralysis will end the career that I've fought and sacrificed for before it even begins.   Hearing loss is a real possibility, but not as scary for me because I know that I will still have hearing in one good ear.  Still, to be honest, I'm feeling pretty sorry for myself right now.   :-\

At this point, the dizziness is severe and is causing a lot of problems in my life.  I've gone from being a straight-A student to straight-B's because I can't focus and the hours of reading are making me literally sick every day.  I'm trying to slow down and consider my options, but at this point I just want this all to go away.  My symptoms have developed over just a few short months, and the dizziness has gone from mild to severe within just 3-4 weeks.  At this point, I feel unsafe driving a car.

I look forward to getting to know all of you.  I'm so thankful I found this board.  Right now I just feel very alone and scared, and I'm thankful I've found a place where I can meet some people who can relate.  I've been reading your stories for hours this morning, and I am so impressed by the strength and support here.
 
Thanks in advance!!

Lyn
9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

CHD63

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Re: Newbie- 31 years old, just diagnosed 10/15
« Reply #1 on: October 18, 2009, 08:56:06 am »
Lyn .....

So sorry you had to have an AN to find us, but so glad you did find us!  You will find this a very caring, supportive group of friends!  We are here for you through this whole ordeal.

First of all, take a deep breath and realize you have several options for an AN of your size.  With your symptoms being quite troublesome, you will undoubtedly want to seek treatment soon, rather than waiting and watching very long.  However, I would urge you to continue the research you have been doing and then seek out the most experienced medical physicians you can find, whether you opt to go the radiation or surgical route.  You want a doctor who has dealt with hundreds of ANs, not just one who has seen an occasional one.

You did not say in what part of the country (or world) you live, but we have active members on this Forum who will be happy to share their positive experiences at various medical sites.

Please keep us up to date on how you are doing and ask away with any questions you may have.

My best thoughts.  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

lawmama

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Re: Newbie- 31 years old, just diagnosed 10/15
« Reply #2 on: October 18, 2009, 09:00:44 am »
Clarice,

I'm very fortunate to live in the Gainsville, Florida area, therefore I will almost certainly be going through Shands for my care.  Thus far, I am leaning towards Dr. Friedman, but I'm very open to suggestions.

Thank you for your response and kind words!

Lyn
9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

lori67

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Re: Newbie- 31 years old, just diagnosed 10/15
« Reply #3 on: October 18, 2009, 09:06:40 am »
Welcome to the family, Lyn!

It's completely normal to feel alone and scared at this point - you're probably still feeling scared, but now you're not alone.   ;)

As someone who has had facial paralysis since my surgery 2 1/2 years ago, I can tell you that it's definitely not a career ender.  Of course, at the moment, I'm a stay at home mom to my little ones, but once the youngest is in school full time, I plan to go back to work (I'm a nurse and a PT).  I don't think my facial issues will affect my ability to do either of these jobs.  I really think the only difficulty would come from being self-conscious, but I have actually gotten over most of that already.  

I volunteer at the school library and also doing budget counseling for military service members as well as other community activities, so I am face to face with people I don't know all the time.  No one has treated me any differently.

I will mention that your AN is relatively small, so you may be jumping the gun a bit.  It's probably a good idea to get all your treatment options first.  You may not even have to deal with any facial paralysis problems and you may not lose your hearing.  

Take a deep breath, talk to your doctors about your concerns and get as many medical opinions as you need until you feel comfortable.  You'll get through this!

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

tenai98

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Re: Newbie- 31 years old, just diagnosed 10/15
« Reply #4 on: October 18, 2009, 09:08:32 am »
Lyn
Welcome to  our family of aners....I too feared facial paralysis as I work with 16yr olds teaching them to drive. But I was lucky in coming our of surgery with no paralysis whatsoever...Ask questions and do ur research.
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

Sue Vogel

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Re: Newbie- 31 years old, just diagnosed 10/15
« Reply #5 on: October 18, 2009, 09:15:08 am »
Lyn,  Clarice is right.  Take a deep breath.  You're a smart woman.  Do your research and gather your data as you gear up to speak to a surgeon so that you can get your questions answered.  There are many, many talented surgeons in the country who do miraculous work with AN surgery.  I had the exact same fears as you about facial paralysis and my career as a department chair in science teaching.  My attitude was to approach the surgery with nothing but optimism and positive thoughts that I would return to my profession with a new normal.  I did just that, and you will find many others on the AN site who will say the same thing.  I know of a young woman who was diagnosed in her final semester of law school last spring, and her surgery lead to a diagnosis of NF2 with multiple tumors.  She is doing great and is now doing her internship.  You are going to do great as well.  Think positive and take charge of your destiny.  Knowledge is power.

Bless you in your journey.

SUE :)
3 cm left side
Translab. surgery 10/13/08
Dr. Gantz/Dr. Woodson
Univ. of Iowa Hospitals and Clinics
SSD, adjusting to balance issues
BAHA surgery 1/29/10 Dr. Gantz/Dr. Woodson (dynamic duo)

epc1970

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Re: Newbie- 31 years old, just diagnosed 10/15
« Reply #6 on: October 18, 2009, 09:21:00 am »
Hi Lyn
I completely understand all of your fears and concerns. While all are very real concerns, there is also the very real possiblilty that treatment will not result in all that you fear. I had surgery and while I did have temporary facial paralysis, I not longer have any. I did loose most but not all of my hearing in my AN ear. The good thing about the size of your AN is that you are able to pick from all of the treatment options and you have the time to make that choice. My best suggestion is to seek treatment from someone who is very expirenced with treating AN's. I wish you the best of luck while you decide what type of treatment you want. Give it some time to absorb the enormity of the diagnosis that you have just received.
Erin

Nickittynic

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Re: Newbie- 31 years old, just diagnosed 10/15
« Reply #7 on: October 18, 2009, 09:54:21 am »
Welcome!  ;D

I'm new the to forums as well, but am post-treatment.
I can identify with a lot of what you're going through as I'm also young (24 now, 23 when diagnosed), the mother of two young kids (aged 1 and 3), and in a service profession (I'm a nurse). Fortunately for me, my pre-treatment issues were not as severe as yours. Unfortunately for me, that meant my tumor got pretty big before it was discovered, and was already "stuck" on my facial nerve, so I do have facial paralysis now (only 3.5 weeks postop, so there is still plenty of hope for recovery). I do have a lot of fears of returning to work with facial paralysis (afterall, do *you* want the nurse who looks like she's just had a stroke or something?), but we'll see how it is when the time comes to return to work.

Having a big tumor also limited my treatment options, but you have a wide variety of options, which of course can be both good and bad. Take your time to consult a number of doctors and reserach your options - with lots of rest breaks in between.  ;)

Squeeze your kids tight and don't worry about school. I know what it's like to suffer through a tough school program and be afraid something will stand in your way (nursing school is no picnic either, and my husband and I got pregnant with our son in my second to last year!). But school will always be there and if you have the drive and desire to finish, you certainly will!
Keep your chin up! We're here when you need support!
25 year old OBGYN nurse, wife, mother of two
5.5cm x 3.1cm left side AN removed via retrosigmoid 9/09 @ Hopkins
SSD, Tinnitus, Chronic Migraines, Facial paralysis (improving!)
Resolved - Left sided weakness, Cognitive issues
Gold weight, upper and lower punctal plugs, tarsorrhaphy

Jim Scott

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Re: Newbie- 31 years old, just diagnosed 10/15
« Reply #8 on: October 18, 2009, 02:32:09 pm »
Hello - and welcome, Lyn ~

As always, I'm sorry to learn of another person receiving the dreaded AN diagnosis but, since you have, I'm pleased you decided to visit the ANA website, read the messages on the forums, register and post here.  As you noted, there is a host of very caring, knowledgeable folks populating these forums and as you can see, many are eager to reach out and help, via the internet (or phone, in some cases).  We're not doctors and cannot diagnose or dispense medical opinions but we have a lot of practical experience dealing with an acoustic neuroma; from handling the initial diagnosis, researching options (surgery and/or irradiation) and then, post-op healing and recovery as well as regaining normalcy.  As normal as your emotions are for a newly-diagnosed AN patient, there isn't any need for you to feel lonely and scared anymore.   

Clearly, you have a lot on your 'plate'.  The trick is to tackle it in small 'bites'.  For now, you'll do well to follow the advice given in previous posts and research your possibilities.  I can guarantee that when you finally arrive at a decision on treatment (surgery or radiation) as well as a doctor and facility, we'll collectively support that decision because it's usually hard-won, emotionally draining and something that all AN patients have to make, so we can empathize with you in a way few others can.   Our Floridian members can help with suggestions on doctors and hospitals but you're probably on the right track, already.

As a young mother and law school student, you may have to be willing to make some temporary changes and compromises as you go through whatever treatment you chose.  Law school may have to be put on hold for a semester and you might require some help with your kids.  Unfortunately, surgery and/or radiation outcomes cannot be guaranteed.  There are simply too many variables .  As we often say (in unison) 'every AN patient is unique' - so what happens to one (good or not-so-good) doesn't mean another AN patient will have the same experience.  I believe that attitude (and good health 'going in') can make a difference in the outcome and recovery for any AN patient.  With your youth, acumen, obvious ambition and resolve, you're well-equipped for the challleges ahead.  I can guarantee that they're all surmountable, as the stories from other AN patients you've read can attest. 

An acoustic neuroma may well be benign (non-malignant) but it does pose it's own set of obstacles that have to be conquered.  You'll do that, I'm certain.  We're now your 'AN family' and we want to help.  Please use these forums as a resource to inquire and comment as needed.  We'll be here for you, Lyn. 

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.

jerseygirl

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Re: Newbie- 31 years old, just diagnosed 10/15
« Reply #9 on: October 18, 2009, 02:33:05 pm »
Hi Lyn,

Welcome to our special group! I am sure your diagnosis came as quite a shock to you and right now you are thinking about all the worst that could happen but I want to reassure you that your tumor is considered small and the likelihood of severed facial nerve is small too, probably in single digits! Chances are, you might experience some temporary facial weakness and fatigue and then go on with your life. Nowadays they can even save your hearing.

As far as your severe symptoms go, consider it a blessing in disguise. If you did not have them, the tumor would have been discovered much later, say 10 year from now, when it would have been much bigger and odds of it complete removal (if you choose surgery) and no morbidity much less.  To relieve some of the dizziness, vestibular retraining might be worth a try. Best of luck to you and remind yourself that all treatment options are open to you and with a small tumor like yours chances of success are generally excellent!

                  Eve
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.

Kaybo

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Re: Newbie- 31 years old, just diagnosed 10/15
« Reply #10 on: October 18, 2009, 03:40:31 pm »
Lyn~
Hi and Welcome!
You have already received a wonderful welcome & lots of advice.  I would be more than happy to talk to you on the phone if you would like - PM me your number and what a good time to call is.  I had surgery when I was 25 - 13 years ago.  I also had a stroke on the operating table, probably b/c I was there so long.  THIS IS NOT A COMMON THING!  I tell you that not to scare you, but to let you know that I have a VERY active, great life now.  I have gone on to have 3 beautiful girlies, am on 2 PTA boards, was a Children's Minister, and a whole host of other things - oh yeah, I taught school everyday for 6 years after I had surgery (1st & 3rd grades) - all with a face that was COMPLETELY PARALYZED on one side!! Even though I wouldn't wish this on my worst enemy (the AN or the effects of surgery), it still isn't the end of the world.  Like everyone has said, take a deep breath & know that everything is going to be OK - if you have gotten this far thru law school, you obviously are one TOUGH MAMA!!   ;)

K   ;D

PS - click on the world icon on left if you want to check out my blog!
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

lawmama

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Re: Newbie- 31 years old, just diagnosed 10/15
« Reply #11 on: October 18, 2009, 04:33:01 pm »
Thank you, thank you, thank you all.  You're right, I'm still very much in shock, but I can't tell you how much better I feel after the warm and supportive welcome.  I look forward to getting to know all of you better.

Lyn
9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

leapyrtwins

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Re: Newbie- 31 years old, just diagnosed 10/15
« Reply #12 on: October 18, 2009, 09:34:00 pm »
Hi, Lyn -

welcome to the forum.  Here's a link that might interest you http://anausa.org/forum/index.php?topic=7364.0

Not sure how far Gainesville is from Tampa, but you might want to check out Dr. Bartels.

Best,

Jan
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

alicia

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Re: Newbie- 31 years old, just diagnosed 10/15
« Reply #13 on: October 19, 2009, 09:21:30 am »
Lyn - I am so glad that you found this forum!  I have to say, I am crying all over again when I read Donnalynn's post!  What she and all the others have said is so true.  This is going to steer you in a direction you did not anticipate, but you will get back to what you want.  My surgery was in May for a very large tumor and by August, I was feeling 100%.  No facial paralysis! 

We understand the sadness, scariness, and anger that goes along with this diagnosis.  Hang in there, try to relax, this is just another thing added to your "To Do" List.  We are here for you.   ;)  Alicia
02/16/18 III to IV post GK Facial Paralysis
12/13/17 Gamma Knife
05/19/09 Translab Larger than expected - Drs used the word "tangerine"   House - Friedman and Schwartz
04/02/09 Diagnosed Left AN 3.2cm x 2.6cm x 2.7cm

newmommyLA

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Re: Newbie- 31 years old, just diagnosed 10/15
« Reply #14 on: October 19, 2009, 11:29:48 am »
Hey Lyn,
Welcome to the forum.  I am also a newbie here as I was diagnosed less than a month ago with my AN.  Like you, I thought I was going to die and I imagined the worst until I found this site where I have met so many kind people who have shared their stories and given me great support.  For the past month I've been a bit obsessive with my desire to learn about this type of tumor and to educate myself about what the treatment and recovery will be like.  I am also young, 34, and I just had my first baby, a beautiful 3 month old boy.  It didn't take me long to decide that I wanted surgery and to get with on my life as quickly as possible.  I've witnessed great success stories here and I've armed myself with lots of knowledge about what I should expect while I'm in the hospital and afterward during recovery.  I am having middle fossa at House in a little over a week and I will post a journal sharing my story with everyone on this forum.  I hope it helps you and others who have been recently diagnosed and gives you confidence knowing that you're going to get through this. 

Take Care,
Amy
6mmx8mm AN rt side.  Mid-fossa surgery HEI House/Schwartz 10/28/09.  Temp facial paralysis (8 weeks), SSD, severe tinnitus & hyperacusis, tumor all gone.  12/23/09 cochlear nerve section (trying to reduce tinnitus) no major improvement on tinnitus. Trying biofeedback/neurofeedback for tinnitus.