Author Topic: Just diagnosed  (Read 4024 times)

MAlegant

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Re: Just diagnosed
« Reply #15 on: August 11, 2008, 12:33:01 pm »
Hi Kim,
Welcome to this very special place.  We learn and lean on each other.  That support is incredibly important to all of us, I think.  You have the luxury of time to find the right doctors and the right hospital.  Once you've made your decision (and you sound like a planner to me!), you will do what needs to be done to preserve your health, and your family and friends will rally round you in ways that might surprise you.  And you will be ok.  You will. Keep us informed as you go; we will want to know how you are doing.  I didn't do any watching and waiting, but there are a lot of folks on this forum in that situation that you should be able to relate to.  We can all relate to your diagnosis, your hopes and your fears. 
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.

Jim Scott

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Re: Just diagnosed
« Reply #16 on: August 11, 2008, 02:07:37 pm »
Hello, Kimbo:

Let me add my greeting to the chorus of welcoming messages and add that, although all of the best advice has been offered, i.e.  radiation treatment, I'm still pleased that you've found the ANA website and message boards, which, as has been amply stated, are chock-full of information and support.  I trust you'll be back often for whatever questions you may have, which will probably be many.  Don't be timid about posting a question here because we understand your concerns and likely bewilderment when you receive conflicting statements from medical professionals and/or see 'horror stories' (poor outcomes from surgery or radiation) on internet forums such as this and then, begin stressing - unnecessarily.  Some of us are probably older than you, had an Acoustic Neuroma that was much larger than yours, underwent both surgery and radiation and came out just fine with only very minor residual effects, if any.  I'm one of those folks.  :)

See you around, Kimbo!

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.

Kaybo

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Re: Just diagnosed
« Reply #17 on: August 11, 2008, 03:10:59 pm »
Hey Kimbo and WELCOME!

As everyone has said - you probably didn't want to find this site and belong, but it is a GREAT place to be!  I had surgery 12 years ago and I guess most people would say that I had a lot of "negative" outcomes, but I don't really think so.  I have a great life now with 3 beautiful daughters and a wonderful, supportive husband.  Life couldn't get much better!  Check out my blog (address below) and see what life is like for me 12 years after surgery (& lots of issues along the way!)!!!   ;D  Please feel free to contact me if you would like to converse more!

K
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!

leapyrtwins

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Re: Just diagnosed
« Reply #18 on: August 16, 2008, 09:54:54 pm »
Hi Kimbo and welcome!

Sorry I'm "getting here" so late, but I went out of town just about the time you joined the forum and I just recently returned.

I don't really have anything to add to the wonderful advice that everyone else has given you; just wanted to say "hi"  :)

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

lholl36233

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Re: Just diagnosed
« Reply #19 on: August 17, 2008, 05:43:02 am »
Hi Kim,

Have you ever been prescribed prednisone for your hearing loss?  It doesn't make sense to me but when I first had my hearing tested, I had moderate to severe hearing loss.  Speech discrimination in my left ear was 78%.  After a round of prednisone, the ear was normal.  Speech discrimination was 100%.

Laura
Proton Radiation for my hemangioma at MGH December 2009.  Hearing has improved.  Doing great!

kimbo

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Re: Just diagnosed
« Reply #20 on: August 17, 2008, 06:02:37 am »
Laura

Thanks for your reply and yes I have had prednisone twice with minimal or no effect - I only wish the drug did that trick on me my family would not be so frustrated with my hearing loss and me saying "what did you say"

Kim
Diagn 8/8/08 AN right 13mm x 9mm
mod/severe hearing loss & tinnitus
Translab surgery 05/17/2011
SSD & CSF leak x 4
Aussie

calimama

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Re: Just diagnosed
« Reply #21 on: August 17, 2008, 06:16:14 am »
Hi Kimbo...

Greetings from a fellow Aussie (I am Canadian but lived in Oz for nearly 5 years and got citizenship, but now back in Toronto Canada).

I am sorry about your diagnosis but glad you found this site as you will find the people here a great source of information, support, and hope. I was diagnosed in January this year and just had surgery in June. I know that the "horror" stories of surgery are overwhelming to the otherwise healthy, but in the end i surprised myself and had surgery. As per my "update" post of a few days ago, i think it is harder dealing with the diagnosis and decisions around treatment that recovering from surgery, but that is just my opinion.

I am about 10 weeks post surgery and happy to answer any questions if you want to PM me.

Where are you in NSW? I lived in Adelaide originally and then Sydney for the last few years.

We are all here for you.

Trish
« Last Edit: August 17, 2008, 06:52:38 am by calimama »
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

kimbo

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Re: Just diagnosed
« Reply #22 on: August 17, 2008, 03:12:10 pm »
Trish

Thank you for your wishes and support and yes some of the surgery stories are overwhelming but since I have been of the forum (I havn't done much else mind you) I have found the knowledge and experiences really helpful.  I believe just in 2 weeks I am a better emotionally.   

I live in New South Wales in a small town called Young (Cherry Capital of Australia).  The town is a farming community mainly based on stone fruit, broad acre cropping (wheat & canola) and stock.  My husband lived in Canada back in the early 1980's for 18 months; he was in Alberta I think.  I will try and find your post and read your story.  I hope your recovery meets your expecatations and wishes; I can see you have a young family.

Look forward to reading your progress.

Kim
Diagn 8/8/08 AN right 13mm x 9mm
mod/severe hearing loss & tinnitus
Translab surgery 05/17/2011
SSD & CSF leak x 4
Aussie

LisaP

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Re: Just diagnosed
« Reply #23 on: August 17, 2008, 04:14:28 pm »
Hi

I am considered a "Newbie" and was dx back in March of 08.   I am still learning and trying to spend as much time as I can on this forum.   I am on the "watch and wait" list also, mine is considered small.   My advise to you is to use this forum as much as you can.  There is so much to learn.  Ask questions as you need to.  I get confused easily because there is so much information but the people on this forum are very helpful and will answer any question.

Welcome

LisaP
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

kimbo

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Re: Just diagnosed
« Reply #24 on: August 17, 2008, 04:34:07 pm »
LisaP - Good to meet you, nothing like a fellow W&W.   What are your symptoms?  Yes it is confusing there is lso much information to absorb.  I am looking forward to the day that I can put the thoughts of the AN back it my mind and just get on with it.  It seems to consumed me a bit over the past two weeks; however I expect that is normal. 

Look forward to hearing your journey.

Kim.

Diagn 8/8/08 AN right 13mm x 9mm
mod/severe hearing loss & tinnitus
Translab surgery 05/17/2011
SSD & CSF leak x 4
Aussie

cindyj

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Re: Just diagnosed
« Reply #25 on: August 17, 2008, 05:25:54 pm »
Hi Kim,

Welcome to the site!  You've already met many of the great folks here and received their good advice.  I just wanted to say hello.  Sounds like you have a good positive attitude and are doing everything you can to educate yourself.  I have been hanging out here for about six months and continue to learn so much.  Keep us posted and we all wish you the best!

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

calimama

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Re: Just diagnosed
« Reply #26 on: August 17, 2008, 06:44:10 pm »
Kim,

As you and LisaP have indicated, the beginning is all about getting as much info as you can, so you can understand what you have and what your options are, and make informed decisions. I spent pretty much 2 months straight, reading research and whatever i could find about ANs and treatment. Like you, i had only some hearing loss and tinnitus, both of whichwere, in hindsight, completely tolerable. I had no other symptoms and an otherwise "unremarkable" history ... healthy, fit, and happy. After being told i had a "tumor" (i will never forget that day) I had many nights waking up wondering what i would do, what would happen to me. I feel like I lost a few months of my life to researching the AN, and as you have probably worked out, this forum was a life saver. I emailed many people out of the blue because they had some experience that i was interested in. I always got replies...  warm, helpful, supportive. This forum was the single best thing to come out of all of this (and a few good friends i made on the CK forum).

Another thing that really impressed on me during the part of the "journey" before surgery was that in some ways i was really fortunate, lucky... that i did not have cancer (some of the stories in the guest book i read while waiting for radiation consultations brought me to tears); that it was me who had the tumor and not my baby or someone else i deeply loved; that the internet and this forum were here to inform and guide me; that i had access to the health care i would need; that i had a supportive job, husband, and family to help me through whatever i would face; that i had a baby which provided me the strength and inspiration to face whatever i had to; that i caught the AN before it was worse/bigger (and mine was not really small either), that ....... ok, as you can see i am a bit philosophical at the moment. Like i have said though, even with the issues i have post surgery, i am just so happy to have this thing behind me and moving on with my life, one day at a time. I don't think i could have done the W&W, but then again i was advised to deal with it sooner rather than later. Everyone is different.

I guess all i am saying is that as scary as this might be right now, good things will come from it if you look for them. Some of the stories shared with me on this site were terrifying, some inspiring. After surgery i had cards and prayers (and i am not religious, but appreciate the thoughts) coming from everywhere... strangers, friends old and new, family i have never met or barely know. It's quite amazing.

Enjoy all that great skiing. I will look up Young and see where it is... it does not sound familiar but i am sure i have been close to there at some point. I am sure it is beautiful country. Sigh....

And yes, i have a young family in that my babe is 17months. I am 39 and still hoping for another baby...now that i have surgery behind me, i can go on with life!

Keep in touch and stay positive.

Trish
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.