Author Topic: Newly Diagnosised and overwhelmed  (Read 8102 times)

jdunavan

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Newly Diagnosised and overwhelmed
« on: February 25, 2011, 05:29:04 pm »
So I was diagnosised with AN about 2 weeks ago.  It started with a trip to the ENT for frequent headaches and ear pain.  I thought it was all allergy and sinus related.  I wasn't expecting what I got!  First, the doctor I saw had the bedside manner of  (as my husband puts it) dog poo.  He was awful.  But he did get the job done and diagnosised my AN.  I was shocked to find out that i had signifcant hearing loss.  I just thought my ear was clogged or plugged because of allergies.  Then suddenly I having all these tests and and MRI.  I went in with a small head ache and 2 weeks later came out with a brain tumor!  Not what i had in mind on my list of things to do this year.  The doctor quickly got me in contact with a specialist in Atlanta and i ment with him on Wednesday.  He went over the options, and because i am only 35 his suggestion was surgery.  We (my family and I) agree.  So now the next step is to meet with the Nerosurgeon and schedule surgery.  Everything is happening so fast, but seems so slow at the same time.  I just want it over and done with.  But the more I read about this, the more i am realizing i am not going to just get to have surgery and walk away from this like it never happened.  I'm scared!  I have 3 beautiful children and a wonderful husband.  I wasn't planing on being half deaf at 35!  It's all a bit much right now, and honestly, I am just glad to have a place to put my thoughts down in writing somewhere.  I don't know that I am looking for answers or anything right now, but it is wonderful to be able to get some of these thoughts out there!
Thanks,
Joanne in Georgia
Joanne
1.4 cm in right ear

Jim Scott

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Re: Newly Diagnosised and overwhelmed
« Reply #1 on: February 25, 2011, 06:33:39 pm »
Joanne ~

Hello and welcome, although I know you wish you didn't have a reason to be posting on the ANA website, I'm glad you discovered us.  We understand what you're going through right now and it is a bit upsetting.  I felt like I was on an 'express' train and couldn't get off, once my large AN was discovered and surgery was (quickly) scheduled.  I was fortunate to find a neurosurgeon very experienced in AN removals.  He recommended 'debulking' surgery to reduce the AN (it was pressing hard on my brainstem) cut off it's blood supply and make it amenable to radiation intended to 'kill' it's DNA and effectively stop it from growing, ever again.  I'm happy to report that both procedures were very successful with no real complications.  Although every AN patient is unique and no one - including the doctor - can guarantee the ultimate outcome of surgery or radiation, AN surgery is not without lots of good outcomes.  However, your fears are not unreasonable.  AN removal surgery is complicated and carries, like any 'delicate' surgery, inevitable risks.  It isn't like other simple operations that have you back to 'normal' within a few days or weeks.  In my opinion, the SSD (Single Sided Deafness) you mentioned isn't so terrible, but there are readily available BAHA (Bone Anchored Hearing Aid) devices that can bring your hearing back to a very usable level.  More on that will come in posts from folks who have a BAHA, I'm sure.  Meanwhile, feel free to vent, ask a question or whatever you need to do.  If not here, where?  We 'get it' because we've been where you are, now.  We survived - and so will you.  I'm guessing, with your husband and children supporting you along with us, of course, you'll do quite well, too.  :)

Jim
« Last Edit: February 26, 2011, 04:19:34 pm by Jim Scott »
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.

Kaybo

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Re: Newly Diagnosised and overwhelmed
« Reply #2 on: February 25, 2011, 08:46:37 pm »
Hi Joanne and Welcome!  I am sorry that you have to join our little club, but you won't find more answers or caring people than here!!  I had my surgery when I was 25 and before kids but like you, I have 3 wonderful daughters now and a great life.  If you would like to talk to someone that has "been there," I'd be more than happy to give you a call.  Just send me a PM (on left) and give me your number and when is the best time to call!

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!

cindyj

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Re: Newly Diagnosised and overwhelmed
« Reply #3 on: February 26, 2011, 09:09:41 am »
Hi, Joanne!  Glad you found us, sorry you had to...I live in GA also - up in Forsyth County...where are you?  Which doc in Atl did you meet with?  I am going to send you a PM (look for it at the top of your screen - will say you have Message) with my phone # if you'd like to talk.  It is scary, but please know that you will be fine and life can be just as full for you post treatment as it is for you now (especially for you w/ 3 little ones :) ).  I am  older than you, but I had perfect hearing at diagnosis and am now completely deaf on one side.  It is an adjustment for sure, but you do adjust...I play tennis, just did a 1/2 marathon (slowly  ;) ) and my husband & I ballroom and swing dance every week! 

Keep us posted and do give me a call anytime!

Cindy
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

Syl

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Re: Newly Diagnosised and overwhelmed
« Reply #4 on: February 26, 2011, 11:08:42 am »
Joanne:

Welcome to the club that no one really ever wants to join. Finding out you have an AN is alot to take in, but we are here to help if you need advice, feedback or if you just need to vent. Though our hearing isn't the best, we are good listeners. The AN journey is a challenging one, but you will get through this.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

CHD63

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Re: Newly Diagnosised and overwhelmed
« Reply #5 on: February 26, 2011, 01:06:12 pm »
Hi Joanne and welcome to this forum .....

Sorry to be late with the welcome, but I was having my own "pity party" for a couple of weeks ..... we are entitled to them, you know.  It is so normal to be terrified upon diagnosis, especially if we were caught off guard.

Take a deep breath, stay with us, and we will all walk through this with you.

If you have not already done so, send for the free informational packet from the ANA.  See:  http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195

Since you have an appointment with a neurosurgeon next week, print the list of questions for physicians from the ANA to take with you.  See:  http://www.anausa.org/index.php?option=com_content&view=article&id=118&Itemid=116

Many thoughts and prayers.

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

wwarr

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Re: Newly Diagnosised and overwhelmed
« Reply #6 on: February 26, 2011, 09:39:40 pm »
Hi Joanne,

I am so sorry you got the "AN diagnosis".  It's a very undaunting and overwhelming feeling hearing those words but you will find that you are not alone in your AN journey and alot of incredible people are on this forum.  We understand what you're going through as we have been there.  It's normal what you are feeling right now.  I said those same words that I just wanted it over with.  That's why I chose surgery and had a middle fossa 7 months ago at House Ear Institute in Los Angeles. 

Clarice had a great suggestion in taking those questions listed at that link with you to the Doctor and discussing them.  Also, you can call the Acoustic Neuroma Association and ask them to send you pamplets that you can read about your acoustic neuroma.  Judy Vitucci is the executive director and the number is #1-770-205-8211.  This was very helpful to me.  I found the more I read and was informed it relieved my anxieties.  Knowlege is definately empowering.

Hang in there right now and you can do this.  You can get through this with support all around you.  I am a mother of 5 children so I know your concerns but you just adapt to your new changes in recovery and push on.  Please feel free to message me your number if you need to talk. 

I will keep you in my prayers!

Wendy  :)
4 mm x 8 mm 12/08
1.4 cm rt. AN middle fossa on 7/23/10
hearing and facial nerve preserved. Grateful for brilliant surgeons Dr. Friedman/ Dr. Schwartz @ HEI in LA, CA.

post op chronic headaches
”Faith in every footstep...let go and let God”

Suu

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Re: Newly Diagnosised and overwhelmed
« Reply #7 on: February 27, 2011, 03:11:34 am »
G'day Joanne - you have come to the right place for support and guidance.  Write as much as you can as it helps newbies who have just been diagnosed as well as us being there for you whenever and however we can.

Clarice - thanks for those links.  I've printed the questions out to take to the hospital tomorrow when I have my checkup.

Hope to hear from you again soon, Joanne.

Regards,
Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

JAnneMan

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Re: Newly Diagnosised and overwhelmed
« Reply #8 on: February 27, 2011, 04:21:21 am »
Dear Joanne, bless you!  It is a shock to get an AN diagnosis.  When my doctor told me, I seriously asked him if he had the correct medical records in hand - that there must be a mix-up with someone else  :-[.  It is overwhelming, but you will get through it.  Life goes on and everything that is beautiful and wonderful in your life (e.g., your husband and 3 little ones!) will remain beautiful and wonderful.  Like all so called "bad" things that happen as we go through life, having an AN will bring gifts and blessings as well.   

I think the MAIN thing you need to do and probably everyone here would agree is to find a Doctor who specializes in ANs.  Get second and third opinions - find a professional team that you feel good about.  You didn't mention the size of your tumor.  If it's small or medium-sized (2.5 cm or less), gamma-knife treatment is something to consider.  Research your choices carefully and give yourself time to do so. 

We are all here for you - please write as needed!         
Love & Light, Anne

leapyrtwins

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Re: Newly Diagnosised and overwhelmed
« Reply #9 on: February 27, 2011, 09:55:05 am »
Hi, Joanne, welcome to the Forum.

Being diagnosed with an Acoustic Neuroma is definitely overwhelming - I know, I've been there  :)

But you'll get through this; there is life after an AN.  Surgery isn't as bad as it sounds.  As for being 1/2 deaf, I found that the solution to the problem is a BAHA (bone-anchored hearing aid).  It's fabulous, in my opinion. 

You should get in touch with both the ANA and cindyj - excellent resources.

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

Chris P

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Re: Newly Diagnosised and overwhelmed
« Reply #10 on: February 27, 2011, 11:18:04 am »
Hi Joanne in Georgia,

   I am sorry you are going through this but as the others have said this is a great support group.  I was diagnosed last June 2010 and when my ENT told me after reading my MRI that I had an AN I shut down.  Luckly my husband was there to hear what she had to say.  I came home and began to research online and became more anxious.  I wanted it to be fixed and better .  I was experiencing Vertigo an I needed help.  I opted for the Gamma Knife since I live near Gainsville, Florida and Shands had the Gamma Knife and Dr. Friedman who was one of the inventors of the GK. 
   I met with him and his team and felt sure I had made the right decision. After my GK I felt great .  I have had some symptoms arise 4 months after surgery , facial weakness and hearing loss , but I am told that is normal and they should improve.  There was some swelling putting pressure on the nerves.  I have seen some improvement and am hopeful that it will be totally better soon.  I do not think the hearing will improve but the facial weakness should. 
   Like the others have said you learn to live with it and make the best of each day.  It is a slow process and one needs patience.  I was told by my doctor's nurse that the tumor is slow growing and it is also slow to shrink. 
   I mainly chose the GK because of the great doctor's at Shands and if it did not work I knew I always had the choice of surgery down the road.  I am 63 and retired so I can rest and take my time each day.  I know when you are young and have a family it is harder to deal but with the support of your husband and children and the ANA group you will be fine.  Hang in there and if you have any questions just write me on my email address.  Keep us informed and relax.

Chris P.

   
Small AN 14mm , right side , Gamma Knife Radiation 6/22/10 Gainsville, Florida.
Balance issues, hearing loss and facial weakness appeared four months post op.

sterry

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Re: Newly Diagnosised and overwhelmed
« Reply #11 on: February 27, 2011, 11:55:32 am »
Hi Joanne,
   I remember feeling  a lot like you.  My original reason to see the doctor was " sinus" related too!  I think the important thing to do is find a surgeon with lots of experience in removing AN and the support of your family , so you are on the right track :) best of luck to you.
Susie
Left AN 3.7 cm. 10-23-09 
HEI Dr. Friedman, Dr. Schwartz
Translab
Doing well

BostonBill

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Re: Newly Diagnosised and overwhelmed
« Reply #12 on: February 28, 2011, 07:57:39 pm »
Hi Joanne,
I was also recently diagnosed and in the process of scheduling my appointment for my surgery. I am putting it off till June so I can enjoy my youngest sons senior year and all that goes along with it. I am also going away on a family trip to Cancun in May.
Do the very best you can planning, make the best decisions for the best possible outcome, most importantly get the best team of Doctors that specialize in AN surgery.
After that try to focus on the positive, sure there are negatives but I do believe most get resolved in time. This surgery rarely I believe has serious life long consequences, when caught in time and done by component and dedicated professionals. You are young, with a family that will give you the motivation to get through this.
Be positive, get the best team of Doctors and you will do great!
Bill
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.

jaylogs

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Re: Newly Diagnosised and overwhelmed
« Reply #13 on: March 01, 2011, 09:17:40 am »
Hi Joane! I know I am late in coming into this, but I just wanted to add my wishes and prayers to the already growing list here.  I can't offer much more than what has already been said. As you can see, we are a good bunch of caring people who're all in various stages of this thing we call AN.  As Jan said, there is life after surgery and this all will seem like a distant memory.  For now, just keep asking questions and get your options. Also, vent as much as possible on here, if you want! We all have at one point or another! :) Take care and good luck!
Jay
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

moe

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Re: Newly Diagnosised and overwhelmed
« Reply #14 on: March 01, 2011, 10:44:19 am »
Hi Joane,
Another belated welcome. Hopefullly you are feeling a bit better now as things are settling down with the diagnoses shock and trauma >:(

One good thing is you know it is there, and it can be addressed, treated, and you can get on with your life.

 Lots of people go years and years with symptoms that never add up and the tumor is then found (me)~ so you are ahead of the game in that arena!

I understand about things happening fast and slow at the same time. Kind of a surreal state of life you are in- that "limbo" stage between diagnoses and treatment.

Please continue to post questions, concerns, angst, worries. You name it, this is a great place!

One day at a time,
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

 


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