Author Topic: Hoping for the best, preparing for the worst (or vice-versa)  (Read 3333 times)

11kirby

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Hi,
I’m a newbie here. I live in Montreal, Canada and I just learned Monday that I have an AN of 3,4 cm on my left side.
I knew something was wrong for a long time since I’ve been experiencing severe earring loss, “bubble head� effect, tinnitus and facial numbness.
Since Monday, I’ve been reading a lot and I’m preparing for the worst while hoping for the best. For the past year, my quality of life has decreased a lot because of the symptoms. I understand I won’t get my earring back and I live pretty well with the ringing in my ear. However, is there any chance my quality of life will increase after the surgery? I know the weeks or months after the surgery won’t be easy and I’m prepared for that (I think) but is there a chance I’ll be less tired, that my balance problem will eventually go away, that I’ll be able to play softball again (I’ve tried 2 weeks ago and had to stop because I was dizzy)? I’m not one to complain a lot and I’m pretty resilient but I don’t think I could go through with a permanent worsening of my condition.
Thank you
P.S. As you might have suspected, English is not my main language so sorry for any language related errors.

Darlene

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Re: Hoping for the best, preparing for the worst (or vice-versa)
« Reply #1 on: May 13, 2009, 12:31:00 pm »
Hi 11 Kirby,

I am also a newbie here, but I wanted to welcome you, I am sorry that you have been diagnosed with and AN but at least you know the cause of your problems.  I have been reading the posts for the past six months and from what I read,  your overall quality of life should improve once you get the isssue taken care of.  Of course everybody is different but the statistics are on your side.   Many of the wonderful people on this site go back too and even relish their lives more than they did before their diagnosis and treatment. 

I know others with alot more experience than I will be along shortly but please know this forum will provide you with alot of information and support, so take advantage of it. 
Wishing you the very best,
Darlene
DX: 12/6/08
1.4cm intracanicular -Middle Fossa Surgery on 7/1/09 @ NYU. Hearing preserved and speech discrimination has actually gotten better!!   Temporary Facial Paralysis- showing improvement.  1yr post-op hearing test- same 96% speech recognition- yeah!

tatianne

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Re: Hoping for the best, preparing for the worst (or vice-versa)
« Reply #2 on: May 13, 2009, 01:15:10 pm »
hi, Im also from Montreal Canada and have an AN...I just under weent Radio Surgery in Sherbrook Quebec last Monday.
I can assure you that you will find good, and reliable information here...also good friends.
I can answer most of your questions about after surgery because I didnt have microsurgery...Im assuming that is the route your taking based on the size of your AN.
I have seen many many come and go from this forum, who have had ANs bigger then you who have gone on to have a very good quality of life. For some symptoms seem to improve, especially things like dizzyness...hearing is always very questionable, it seems to be very much an individual thing. Im confident you will receive many good answers from other members.
If you dont mind me asking, which hospital are you going to and who is your neuro ?
Im with the Jewish General, under the care of Dr, Mohr and Rappaport...
Please, if you ever want to talk or have any questions you think I can help you with please dont hesitate to contact me.
Know that you will be fine and things will improve.
God Bless
T
Waith and Watcher
July 2006 8mm
Jan 2007 9.5 mm
Jan 2009 1.4 cmm x 5mm
GK surgery completed on May 4, 2009 in Sherbrook Quebec, hoping and praying this will be the beginning of the end of my AN......

11kirby

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Re: Hoping for the best, preparing for the worst (or vice-versa)
« Reply #3 on: May 13, 2009, 01:37:20 pm »
Hi Tatianne,
Thank you for your kind words.  I'm meeting with Dr Issam Saliba from Notre-Dame (he also works at Hotel-Dieu, Maisonneuve-Rosemont and Ste-Justine) on may 26th. From what I've read, he seems to be one of the few experts who treats AN in Montreal. I'll know more on the 26th about the team of doctors and the best treatment for my tumor. The doctor doesn't suspect it yet but I'll come prepared with a hundred questions, thanks to this site and its members.
Thank again,
Marie Josée

tatianne

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Re: Hoping for the best, preparing for the worst (or vice-versa)
« Reply #4 on: May 13, 2009, 01:47:22 pm »
Yes Ive heard of him, and hes seems to be a very reputable doctor...Im glad to know your in good hands...
and your right to bring a hundred questiond, this is your health, your body.
Please let me know how things go on the 26th, I will for sure want to know how things are going for you.
Take care
Waith and Watcher
July 2006 8mm
Jan 2007 9.5 mm
Jan 2009 1.4 cmm x 5mm
GK surgery completed on May 4, 2009 in Sherbrook Quebec, hoping and praying this will be the beginning of the end of my AN......

Jim Scott

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Re: Hoping for the best, preparing for the worst (or vice-versa)
« Reply #5 on: May 13, 2009, 02:45:58 pm »
Kirby:

I'm sorry you had a reason to find our website and the forums, but I'm glad that you have. 

No one can honestly offer you a credible, accurate prediction of your post-op condition but you have most of it right.  You also demonstrate a very realistic attitude.  "Hope for the best - prepare for the worst' is an excellent position to take when approaching AN removal surgery.  Your hearing and tinnitus will probably not improve and you will have some balance and fatigue issues post-op.  Almost everyone does.  However, time and some effort on your part will help your recovery.  There are exercises for balance and time and proper rest will take care of the fatigue.  That resiliency you referenced and your practical attitude will be a big help in your recovery.  The chances are very good that you'll be playing softball again. 

By the way:  your English is fine.  :)

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.

Debbi

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Re: Hoping for the best, preparing for the worst (or vice-versa)
« Reply #6 on: May 13, 2009, 05:03:34 pm »
Hi Marie Josee-

I am sorry that you are a member of our elite club, but so glad you found this group.  As Jim says, everyone comes through treatment differently.  Take your time deciding on the right treatment team and the right treatment.  From personal experience, I can say that you will probalby go through a lot of ups and downs in this process - lean on this group for support.  I can personally attest to how great all the people here are.

Good luck!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

EJTampa

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Re: Hoping for the best, preparing for the worst (or vice-versa)
« Reply #7 on: May 13, 2009, 05:13:39 pm »
Hi Marie,
 
Jim is spot on, as usual.  Nobody can tell you for sure what outcome you will have post-surgery.  We all do hope for the best, and if it's possible, prepare for the worst.  Most people adapt to losing the balance nerve on the AN side, although it can take some time.  Staying active after really helps with that.  I am 2 months and 1 week post op and still get light-headed, but my balance overall is good.  I could play sports, but turning my head quickly would cause me some discomfort.
 
To be honest, it's your facial nerve involvement that could cause you the most problems.  Some tumors peel right off while others are sticky and require a lot of work.  Size doesn't seem to be a huge factor when it comes to the facial nerve.  I will pray and hope for a quick and uneventful recovery for you.
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

Vivian B.

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Re: Hoping for the best, preparing for the worst (or vice-versa)
« Reply #8 on: May 13, 2009, 05:46:50 pm »
Hi there,

Just wanted to extend my welcomed. You have joined a great forum and great people. Just wanted to let you know that you will be fine and you will the take the steps to recovery. Think positive and it wiill happen. Keep us posted.

Vivian

CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

CHD63

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Re: Hoping for the best, preparing for the worst (or vice-versa)
« Reply #9 on: May 13, 2009, 06:27:29 pm »
Hi Marie Josee ......

Welcome to our exclusive AN world!  Not the most cherished position, but the people on this forum are awesome with their answers, support, care, prayers, etc. etc.

Just in case you had not been there, check out http://www.anausa.org/questions_for_physicians.html for suggestions before you see any potential surgeons.  I lurked (scared to death) without posting on this site for a year and wish now I had been brave enough to jump in for the wonderful support.  I did, however join the Acoustic Neuroma Association immediately upon diagnosis and absorbed as much of their research as possible.

You will be in my prayers and keep us posted.

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

MAlegant

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Re: Hoping for the best, preparing for the worst (or vice-versa)
« Reply #10 on: May 13, 2009, 07:04:22 pm »
Hello there,
I lived in Montreal from 90-96, so I feel a bit of loyalty.  You live in a beautiful and vibrant city! 

My tumor was about the same size as yours when it was removed.  I didn't have many symptoms pre-op but I was utterly exhausted.  I thought it was just my crazy life, but since the surgery, my fatigue has gone away.  Hopefully, many of your symptoms will go away after surgery also. I wish for you a speedy recovery and a very good outcome.
Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

 


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