Author Topic: Newly Diagnosed  (Read 8191 times)

para1

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Newly Diagnosed
« on: January 21, 2011, 07:48:11 pm »
I just found out that I have an acoustic neuroma.  It is 2.7 cm in size.  I am currently trying to find a dr. that accepts my insurance.  Needless to say I am very nervous and don't know what to expect from surgery.  How is the recovery?  How soon can you return to work?  And this may seem like a vain and dumb question but can you color your hair soon after surgery.  I'm thinking about dying prior to surgery so I don't have to worry about it.


Jim Scott

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Re: Newly Diagnosed
« Reply #1 on: January 21, 2011, 08:00:33 pm »
Hi, Para ~ and welcome to the ANA website discussion forums.  I'm sorry you've been diagnosed with an acoustic neuroma but I think you'll be glad you found this place and the good folks that make it what it is.  It's chock full of information, support and, when appropriate, advice.  

Your nervousness is perfectly normal and we've all been there, so we understand what you're feeling about now.   Lots of folks will jump in to explain what to expect from AN surgery and the ANA offers free, informative booklets that can help answer some of your questions http://www.anausa.org/index.php?option=com_docman&Itemid=156. Frankly, every AN patients surgery experience is a bit different and so is recovery.  The 'average' recovery is 6 weeks but some are back to work in two weeks and others need months to recover.  It's very unique to the individual.  Your question about coloring your hair is perfectly reasonable and I'm sure some of our knowledgeable ladies will be along to answer it for you, soon.   :)

Try not to allow your fears to overwhelm you and think positive.  This is a benign tumor and very treatable.  Most AN patients do pretty well.  I did.  I trust your insurance will be accepted at a doctor that you like and trust.  Choosing an AN doctor is crucial to increasing the odds for a good surgical outcome so don't be hasty in deciding.  I look forward to seeing more posts from you as the days and weeks unfold.  :)

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.

leapyrtwins

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Re: Newly Diagnosed
« Reply #2 on: January 21, 2011, 08:05:24 pm »
Hi para.  Welcome to the world of Acoustic Neuromas. 

It's normal to be nervous and not know what to expect.  Everyone's AN Journey is somewhat unique, but the good news is there are worse things to be diagnosed with.  Most (99.9%) of ANs are benign.

Post op recovery is usually the hardest the first couple of days and then progressively better from that point on. 

Most docs will tell you that recovery generally takes 6 weeks, but some recover faster and some recover slower - and some "issues" take longer to resolve than others.

Returning to work depends on your recovery and what your work entails.  I work a desk job (accountant) and I returned to work part-time 2 1/2 weeks post op and full-time 4 weeks post op.  But that's just me - others had different experiences.  You and your doctor will know when the time is right for you.

As for the hair color question, it's neither vain nor dumb.  Lots of people have the same question.  Usually you have to wait a while post op to color your hair until you head has "healed" - a somewhat subjective term.  You should ask the doc who does your surgery - and don't worry he's heard this question before  ;)

Good luck,

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

para1

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Re: Newly Diagnosed
« Reply #3 on: January 22, 2011, 09:43:23 am »
Thank you so much for your comments and advice.  It's so nice to hear from people who have gone through this and I am glad that you are doing well.  I am going to see a surgeon on Monday so hopefully I will have more information.

Thanks again!

lori67

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Re: Newly Diagnosed
« Reply #4 on: January 22, 2011, 10:16:18 am »
Hi and welcome!

I'll address the most important question - because that's just how I am.... ::)   I colored my hair right before my surgery.  We must think alike!   ;)

I didn't color it again for a few months, but only because I didn't have to go back to work or anything so I really didn't care that much.   :-\  Once all the incisions are well healed you should be good to go.  Ask your doctor when you go for your post op appointment though. I'm sure it's a question he's heard many, many times!

See?  No question is silly around here!

Good luck to you!
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.

kraynok2

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Re: Newly Diagnosed
« Reply #5 on: January 23, 2011, 07:38:14 pm »
I had surgery in November and have debated the coloring your hair question.  My husband keeps asking me when I'm going to the beauty shop.  lol  My hair now has grey, darker roots and blond, although people tell me they don't notice.  I did a search on this site and found pages of discussion on this.  At my 3 week check-up my doctor said it was ok.  But on this forum, I've read of a doctor saying wait 3 months.  I'm waiting the 3 months because I don't want to take my chances.  I started back to work mornings only last week, teaching kindergarten, and no one seemed to notice.  Ask your doctor and go from there.  Also stay here with us.  There is so much good information and discussion on the forum.

moe

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Re: Newly Diagnosed
« Reply #6 on: January 23, 2011, 11:19:33 pm »
I'm thinking about dying prior to surgery so I don't have to worry about it.


Hi and Welcome!
 I couldn't help but chuckle when I read that last line! Don't die :o (oh yea, your hair).

I would imagine dying (your hair) before surgery would be a good idea, like Lori did!

I can't remember when I got my hair dyed post op. I would imagine once the incisions heal up, and no sign of any problem, then you are good to go (ok compromise at 2 months).

My recovery was 6-8 weeks. I lost a lot of blood (very unusual), so was weak and tired from that. I had minimal balance problems, because my other side had already completely compensated.

The sacrificial facial nerve thing is NOT normal, so don't fret. Most people do fine and if there is any damage, it is usually short lived.

Keep asking any questions as you find out more info :)
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

designergal

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Re: Newly Diagnosed
« Reply #7 on: January 24, 2011, 11:36:30 am »
I just had to laugh at the hair question....I am having surgery on March 1 and decided last Thursday to color my grey...myself!  Didn't want to pay the $150+ at the salon if I was going to be laying around for a month or so, well...I did and when I was done, I had 2 purple patches on both sides of my face and a purple patch going down the middle of my head!  Not a good look!  So I then had to stripe it with a product called Color Oops!  Needless to say I will never try that again and will go into surgery with my grey...which I am starting to like!  LOL

Good Luck with your appointment!! 

Kaybo

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Re: Newly Diagnosed
« Reply #8 on: January 24, 2011, 01:22:38 pm »
I was going to say that coloring your hair was THE MOST IMPORTANT THING to do before surgery!!  On that note, *HIGHJACK*, but it IS relative since we are talking about dying hair...I didn't ever have to dye my hair until AGTER surgery...I paid a little too much in Austin to get it done and then we moved to Amarillo and my lady that had done my hair since 8th grade started doing it again.  She used to do Miss Texas' hair so I figured she was ok, even though I only paid $12 for a wash, cut and style and $32 for all that PLUS color (she still pulled it thru a cap but it lasted longer - I made my BF promise to tell me if it started to ever look bad).  Anyway, when Dave told me we had to move, I told him that he better put about $1000 extra dollars in the budget for my hair!!   He hasn't complained at all and I found a salon that I "like" - I LOVE the girl that CUTS it and I like the girl that colors it but I don't LOVE the color...and let me tell you, for what I pay, I should be doing back-flips over the color!!!  Anyone on here that "knows" me knows that I have very WalMart cost taste!!  I need help!  Is there something I can do myself (I don't want purple spots, though!)?  It has always been highlighted (?) - cap or foil - but I just can't bring myself to pay that when I don't love it!!  The ONLY reason that I have paid that is because I have realized that since my face has always not looked so great, I take great pride in my hair - VAIN, I know, but what can I say?
HELP!

K   ;D
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!

ppearl214

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Re: Newly Diagnosed
« Reply #9 on: January 24, 2011, 05:47:13 pm »
This Licensed Cometologist is hoping this stays a wee bit on track re: surgical recovery, return to work and not as much re: hair color.

BTW, hair coloring pre-treatment is fine, as it's what outside the scalp (ie: the hair shaft) that is affected by the color (ie: off-the-scalp highlight or even a single-process/all-over color).

As for recovery and return to work, hoping the folks here will help elaborate on that a little more.


(Geesh, ladies........ I saw that *Hijack*!)


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

james e

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Re: Newly Diagnosed
« Reply #10 on: January 25, 2011, 10:53:07 am »
It is important to "feel good about yourself" and I think it really helps with your recovery. I remember looking in the mirror and thinking I had been in a street fight right after surgery. So, die your hair, wear a wig, dress up...what ever it takes. I was 60 when I had my surgery, have a head full of gray and white hair, but I am a weight lifter, and muscular, and rather youthful for my age. The surgical nurses all bet on my age during  the surgery...missed it by 20 years...and the doctor told me about it. It made me feel great that day. Those little things will help you through this process.

Just ask your doctor about the insurance. They all want to get paid. You are fortunate to be insured, and the docs and hospital will help. Not a big deal.

Recovery is a big deal. Everyone is different and it depends on how large your tumor is, location, surgery or radiation, age, physical condition, and lots of other things. This is going to change your life, but you will find that most people here have had good outcomes, and a few have had problems. None of your questions are stupid or silly. Good luck to you.

James

wendysig

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Re: Newly Diagnosed
« Reply #11 on: January 25, 2011, 09:54:36 pm »
Hi Para1,

I wanted to add my welcome wishes although I'm sorry you need to be here.  Most of us ladies who have enough gray hair to worry about this question have asked it.  In my opinion, it's not vain to want to look the same as you always have.  Definitely color your hair before your surgery -- it will give you a boost and help you feel more normal in in control of something.  My doc told me I could color my hair as close as two days before my surgery and I was glad.  Most docs will allow you to color your hair 6 - 8 weeks after surgery but check with your own doc to make sure. 

It would be unusual to not feel nervous about the surgery.  If you would like physician recommendations, let us know where you live.  Someone here on the forum may be able to recommend someone.  As for recovery, as the others have said, recovery time is an individual experience.  Some people recover very quickly and return to work as early as two weeks later.  Most people find six weeks or  longer is necessary.

Keep us posted.

Best wishes,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

jaylogs

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Re: Newly Diagnosed
« Reply #12 on: January 25, 2011, 10:13:12 pm »
Hello and welcome to our little club...sorry you had to join it but there is none better!!  As far as how long it takes to get back into action it took me about 2 months.  I used my short term disability benefit so I was taken care of financially.  I could have used another month, because my job requires me to be fairly active.  Of course, like everyone says, every person is different and unique so you'll just have to judge it for yourself when it comes time.  One thing that IS important to know is that you don't want to overdo it until you are ready.  This is brain surgery after all! Please feel free to ask more questions...like it was said there is no such thing as a dumb question here!!  Good luck and keep us posted!
Jay

PS: Maureen...you know I didn't even take that "dying" in that context until you pointed it out...too funny! :)
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

mk

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Re: Newly Diagnosed
« Reply #13 on: January 26, 2011, 10:34:47 am »
Most docs will allow you to color your hair 6 - 8 weeks after surgery but check with your own doc to make sure. 


While talking about grey roots etc. How about these kits that you can use for a touch up in-between colorings? I use them regularly between salon visits and they do a pretty decent job in covering up the roots. You can easily avoid the areas that you don't want to be touched, since the application is local. Just a thought.

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.

Mark241

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Re: Newly Diagnosed
« Reply #14 on: January 26, 2011, 10:39:46 am »
Welcome MK! ;D
4cm C1  16hrs                 Barrows, Jan 06      NF2
3.5 cm  Right AN retro       Barrows, Oct 06   
Cranial Plate removal           UNM Nov 07
LP                                   Barrows  Jan,2011
Wound revision                 Barrows Feb, 2011
5mm left middle Fossa,  (2) 2mm spine w&w