Author Topic: Hope and Inspiration for the Newly Diagnosed (Vol II)  (Read 5547 times)

Lisa Peele

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Hope and Inspiration for the Newly Diagnosed (Vol II)
« on: August 09, 2008, 05:18:11 pm »
If you have a "good news" story to share, please do so here...

Hope and Inspiration for the Newly Diagnosed (Vol I) can be found in the archives.

I celebrated the fourth anniversary of my surgery in June and am doing great.   View my profile for details about my AN experience, and feel free to PM me with any questions.  I am happy to help in any way I can!

Lisa P.
Lisa Peele, 38
Dublin, OH
4.3 cm X 3.3 cm (right)
Translab.
House Ear Clinic (Friedman and Hitselberger)
June 14, 2004

lori67

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Re: Hope and Inspiration for the Newly Diagnosed (Vol II)
« Reply #1 on: August 09, 2008, 08:29:44 pm »
Lisa,

Congratulations on your four year anniversary!   ;D  I'm glad to hear you're doing well.

My good news story is that I'm 18 months out from surgery and doing great as well!  Some minor issues to deal with, but I'm here to play with my kids and enjoy my family and friends and I'm able to do everything I could do before my surgery (well, anything that I'd want to do anyway - haven't actually attempted a roller coaster or anything yet   :D).  So that is definitely considered a good news story for me!

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.

Jim Scott

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Re: Hope and Inspiration for the Newly Diagnosed (Vol II)
« Reply #2 on: August 09, 2008, 10:35:51 pm »
Lisa:

Thanks for the creative idea of posting AN  'good news stories'.  Although we have to remain realistic here, we welcome positive input.

I'm 26 months post-op (retro) and 22 months post-FSR.  Both procedures went well and were successful.  My most recent MRI showed some slight tumor shrinkage and definite necrosis.  Obviously, this is splendid news to me. 

I'm retired but quite active and pretty much back to my previous levels of activity, although my stamina is a bit less than it was, which could be as much due to age as the AN treatment.   Overall, I consider myself blessed with a great recovery.  I want all newly diagnosed AN patients to understand that while an AN diagnosis can be a minefield of sorts, you can both survive the experience and do so with minimal complications.  Many of us have and even those with some problems following surgery and/or radiation treatment have surmounted those difficulties with aplomb.  Many of them post here frequently and their stories are nothing short of inspirational.

Acoustic Neuroma is a devilish type of benign tumor, located in a place that is quite problematic, but the experience of diagnosis, decisions on possible treatment (observation, surgery or radiation)  then, getting through the treatment and recovering is sometimes arduous and can be downright depressing for some folks.  At the least, it can alter your self-image, remind you of life's fragility, test your patience, strain your sense of optimism and certainly bring those of us who are believers to our knees in prayer.  It is that powerful and to pretend otherwise would be futile as well as dishonest.  If we are anything on these forums, we are honest.  My successful surgery and radiation and my rapid and near complication-free recovery are very real and certainly worth sharing with other AN patients but so are the other stories because we have to remain realistic as well as optimistic for a good balance of information.  I know this website and these forums are helpful to AN patients and that validates them, in my opinion.

I look forward to reading more positive 'good news' AN stories her as the posts arrive.  :)

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: Hope and Inspiration for the Newly Diagnosed (Vol II)
« Reply #3 on: August 10, 2008, 05:43:05 am »
My good news - although it's old news -  my first annual MRI was "clean". 

My recent BAHA is amazing!!!   ;D

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

Debbi

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Re: Hope and Inspiration for the Newly Diagnosed (Vol II)
« Reply #4 on: August 10, 2008, 09:32:51 am »
I'm not even sure where to start....

I've made many new friends in the AN world which has been a gift!

My husband and I are even closer than we were pre-AN, which neither of us thought was possible.

My dad and I now share something new - we're both SSD - and that has actually opened up some very wonderful conversations between us. 

I'm learning that I don't have to do everything, all the time - it's actually okay to let other people take over sometimes!

I sleep really well because I sleep on my "good" ear, thus turning my deaf ear to the world.   ;D

I am slowly getting a little bit of my smile back.  I'm hoping to look like Cat Deeley when this is all done!! :D

I've learned that I am very resilient and that it would take a lot more than this to get me down and keep me down!!!

Whatever life dishes out, I'm pretty darned sure I can handle it!

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

Lisa Peele

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Re: Hope and Inspiration for the Newly Diagnosed (Vol II)
« Reply #5 on: August 11, 2008, 03:37:34 pm »
Lori, Jim, Jan and Debbi, thank you for taking the time to post on this thread...and with some great thoughts and comments.

I didn't know my tumor was considered life threatening until after I'd already had surgery.  I did know that (1) it had to come out, and (2) there was a possibility of some pretty serious complications during or after surgery.  For the two weeks between diagnosis and surgery, I spent many hours considering the possibilities and trying to figure out what my Life would be like post-op.  And as Jim describes...some of the thoughts did bring me to my knees.  I had four young children and a husband that needed me to return to them...and while I wanted mostly just to return to them...I also wanted to come home in the best shape possible.  Anyone who knows my story is already aware that I did not research AN until well after I came out of surgery.  My husband was the one who did the lion's share of the research (along with my dad).   What they read on-line was terrible...and I had no idea what they'd learned.  They feared greatly for my future quality of life.

I wish more people who have come through well would post.  I have a feeling many people make it through and don't look back.  I promised not to take my recovery for granted and to share my experience with the hopes of helping others envision positive outcomes.  There is a fine line between diagnosis and prognosis.  With any condition, it's hard to predict exactly what any one patient will experience.  There are so many variables.  AN is no different.  Before surgery, I was told of all the possible complications, and was given an estimate (from a local neurosurgeon) of 8-18 hours in surgery with 5 days to 2 weeks in the hospital afterward.  According to her, I would likely need physical therapy to assist with things like speech, swallowing, and regaining balance.  My husband felt there was one shot at getting my tumor out with the fewest complications and set out to find another surgical team for me (he decided on Rick Friedman and William Hitselberger at HEC).  In the end, my 4 cm tumor was completely removed in 3 1/2 hours and I was able to leave the hospital 4 days later.  Four years later, I have one lingering side effect:  decreased hearing in my affected ear.  Brain surgery was not easy...but I've had five children, and labor was honestly worse ;)

My youngest daughter was born in 2006 and was diagnosed with Down syndrome at birth.  We were told to expect that she would be delayed in all areas, that she would have low muscle tone, hearing and vision issues, and chronic ear, sinus and chest infections among a host of other things.  The day she was born, we were told of all the ways she was "imperfect" and of all the health and developmental issues we would most likely face with her.  Fast forward two years...she is a healthy and vibrant little girl--and very few of the things we were told have come to pass.   We were told to lower our expectations with her--to not expect too much, too soon.  I wish we would have heard other voices telling us not to listen to expectations/limitations.  Diagnosis is not prognosis.  Yes, it is a fact that our daughter has Down syndrome.  Yes, she is developmentally delayed...and yes, she is more at risk for certain health issues.  She is also a true joy.  She’s colorful, honest, willful, sweet, and spirited. She is able and full of Life. No matter what she’s doing, she gives her all. Her heart is true, her spirit boundless and her potential infinite.  That--nobody told us to expect.

As with most conditions, there are a wide range of issues and experiences in individuals who have Down syndrome, just as there are with those who have Acoustic Neuroma.  So many variables exist, that it is impossible to predict a “pathâ€? or “futureâ€? for any one person.  Yes, there are statistics that we should consider in making our decisions, but numbers and science aren’t foolproof. 

It is important to be realistic.  It is also important to be hopeful--and "good news" stories (or stories about good things that have come out of less-than-ideal situations) give reason to be...

 
« Last Edit: August 12, 2008, 08:24:08 am by Lisa Peele »
Lisa Peele, 38
Dublin, OH
4.3 cm X 3.3 cm (right)
Translab.
House Ear Clinic (Friedman and Hitselberger)
June 14, 2004

lori67

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Re: Hope and Inspiration for the Newly Diagnosed (Vol II)
« Reply #6 on: August 11, 2008, 07:02:17 pm »
Lisa,

With such a positive attitude, I would not have expected anything less than for you to be doing so well after your surgery.

I think you're probably right that many people have their surgery and don't look back.  It's hard to imagine being one of those people, because this type of thing really changes you in ways you never imagined.  At least it did for me.

I'm glad to hear your little girl (probably not so little anymore) is doing well.  And once again, I wouldn't have expected anything less.   I am sure that with your great outlook and caring family, she will far exceed any of the limitations anyone said she'd have.  The "experts" can say what they want - but Mom always knows best what her child is capable of.  And by the way, I totally agree with you on the labor thing - much worse than AN surgery!!   :o

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.

Jim Scott

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Re: Hope and Inspiration for the Newly Diagnosed (Vol II)
« Reply #7 on: August 12, 2008, 09:03:12 am »
Lisa:

I'm always pleased to share my AN experience and accentuate the positive, as it were.  As I stated, we welcome positive AN stories.  I agree that many of those that are energetic posters when first diagnosed and are hungry for information and support often disappear following a successful surgery or radiation or when they are fully recuperated.  I do understand this desire of some to leave behind the experience and how easy it is to lose that sense of connection with other AN patients, once you are O.K., life returns to normal and you move on. That is simple human nature and I can't condemn it. 

However, because this is a support site and these forums are here for patient support, they attract many newly diagnosed AN patients and those battling complications pre and post surgery and/or radiation.   These folks do need to see successful post-op AN patient's stories and know that even when there are complications, all is not doom-and-gloom once you receive an AN diagnosis.  You proved that, as have many others.  I do caution that we have to be realistic - but not necessarily pessimistic. 

Lisa, I'm a firm believer in two AN-related things:  (1) being pro-active with your research and examination of doctors and facilities and, (2) keeping a positive attitude and not allowing fear and trepidation to bring you down before you ever come close to deciding on a treatment.  This website is dedicated to disseminating factual AN-related information, advice and suggestions as well as being a place to vent, when and if some AN patients find that necessary...and many do. 

I remain an active member on this website (and a forum moderator) two years past my successful surgery & radiation because I have compassion for those just diagnosed and those fighting to regain normalcy in their lives, post-op.  I try to help as best I can with words of advice, encouragement and support.  It isn't much and costs me nothing but I feel a need to do it.  Obviously you also have a similar need and have shown it with your words and the thread you've begun.  I'm so glad you did that.  :)

I wish you and your family all the best.  Your youngest daughter must be a constant joy to you and her spirit that surmounts whatever deficiencies she may have to deal with is truly inspirational.  Thanks for sharing her story - and yours.

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: Hope and Inspiration for the Newly Diagnosed (Vol II)
« Reply #8 on: August 12, 2008, 09:25:28 am »
Lisa~
The fact that I am here and alive today and able to enjoy my wonderful family is proof to me that I had a successful outcome!  I was speaking to a newbie the other day and she said, "Do you didn't have any trouble?" or "So you didn't have any facial paralysis?"  Well, yeah I did, but that is not something that I dwell on - & I guess that she couldn't tell it at all by the way I talked about my experiences (at first)!  One of my best friends has a son with Down syndrome and actually started a support group where we live - it has grown into a BIG group & they have a HUGE Buddy Walk every year.  We are fairly invovled in a lot of their activities and my girlies LOVE the Buddy Walk.  I'm sure she would like to visit with you if you would like that, let me know.

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!

krbonner

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Re: Hope and Inspiration for the Newly Diagnosed (Vol II)
« Reply #9 on: August 12, 2008, 10:11:55 am »
I'm one of the ones guilty of "not looking back" at times.  I had translab surgery almost 2 years ago, and aside from SSD (a known outcome pre-op) I can pretend that it never happened!  I spend my days raising my children and living the life I would've lived even if the AN had never existed.  Sometimes it's hard to remember to come check the boards because I forget that I had that lovely head booger!  LOL!

Thank you for reminding us all that all our stories are important to tell.

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

Lisa Peele

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Re: Hope and Inspiration for the Newly Diagnosed (Vol II)
« Reply #10 on: August 12, 2008, 03:10:19 pm »
Lisa~
The fact that I am here and alive today and able to enjoy my wonderful family is proof to me that I had a successful outcome!  I was speaking to a newbie the other day and she said, "Do you didn't have any trouble?" or "So you didn't have any facial paralysis?"  Well, yeah I did, but that is not something that I dwell on - & I guess that she couldn't tell it at all by the way I talked about my experiences (at first)!  One of my best friends has a son with Down syndrome and actually started a support group where we live - it has grown into a BIG group & they have a HUGE Buddy Walk every year.  We are fairly invovled in a lot of their activities and my girlies LOVE the Buddy Walk.  I'm sure she would like to visit with you if you would like that, let me know.

K

K~Your blogspot & story are amazing & the curly girlies are adorable.  It's inspirational to see how you've embraced AN as an integral part of your fabric, and have not been held down by it.  Your perspective is so valuable not only to people dealing with AN, but to the general population as well.   I love that you embrace Life, while also continuing to encourage others and offer information.

I always love to talk to other DS parents.  I have a website and a blogspot for my daughter, Bridget:  www.bridgets-light.com and www.bridgets-light.blogspot.com.  By the way, I am working on our local Buddy Walk right now...it is at the end of September.  This is our first year having a team, and we are all looking forward to it!
Lisa Peele, 38
Dublin, OH
4.3 cm X 3.3 cm (right)
Translab.
House Ear Clinic (Friedman and Hitselberger)
June 14, 2004

leapyrtwins

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Re: Hope and Inspiration for the Newly Diagnosed (Vol II)
« Reply #11 on: August 13, 2008, 03:51:13 pm »
Lisa -

just had to add to this great thread a second time.

Yesterday, a little over 1 year post op, I rode a bicycle 8+ miles with some of my colleagues from work around the lakes here in Minneapolis, MN.  We're here on business, but had an afternoon free, so we rented bikes and rode around Lake Calhoun, Cedar Lake, and the Isles of the Lakes and took in some truly beautiful scenery.

I just discovered a few months ago, that I could once again balance on a bicycle after my surgery, so this was a nice milestone for me.

We also got in some walking over the past few days, and although I still find myself walking like the proverbial drunken sailor, I'm happy to say I was able to keep up with my colleagues much easier than I could last year at this time.

BTW, I remember checking out the website you created for Bridget some time last year, and I just want to say again how truly beautiful it is.

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

Jeanlea

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Re: Hope and Inspiration for the Newly Diagnosed (Vol II)
« Reply #12 on: August 13, 2008, 08:58:31 pm »
I thought I would add my own success story.  I woke up from my surgery with complete facial paralysis on the surgery side.  It came with all the eye complications.  Nearly three years later I'm doing great!  My face has gradually shown some improvement over time.  I've adapted quite well to the eye care.  This summer I have been very active physically.  I've taken a few longer bike rides, the longest being 27 miles.  Last May I ran a half-marathon.  I have continued to run this summer with my runs being between 3 and 6 miles.  I just returned from a family/friend trip to Isle Royale National Park in Lake Superior.  While I was there I was hiking around the island which meant being in or near the water next to cliff walls.  I called it lateral rock climbing.  I also hiked for 7 1/2 miles on very rugged trails and areas that were heavily wooded with no trails.  Kayaking across the waves gave me no problems either.  If anything I feel stronger than before my AN.  I was always of the opinion that I would be able to do anything that I wanted to and so far it's working. 
A positive attitude is so helpful as Kaybo and Lisa and many others have shared.

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

Rivergirl

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Re: Hope and Inspiration for the Newly Diagnosed (Vol II)
« Reply #13 on: August 14, 2008, 07:04:23 pm »
Lisa, what a beautiful and inspirational story, I was touched and Bridget is adorable!

Jim, love the calender, that is awesome.... :) My 4 month first follow-up MRI scheduled for 10/22, nice to know someone is watching and waiting with us. This forum so helpful as I do tend to downplay this diagnosis as I don't want to bore or upset people, family especially my kids this scares them to think Mom has something growing in her head....thanks for being there everyone.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

sgerrard

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Re: Hope and Inspiration for the Newly Diagnosed (Vol II)
« Reply #14 on: August 17, 2008, 12:25:36 pm »
HI Lisa,

There have been enough posts in this topic that it is now safe for me to be a little bit contrary, as I am sometimes inclined to be. :)

While I always welcome the good news stories, and we had a good run of them this summer, I actually find more hope and inspiration in the "bad news" stories, many of which turn out well in the end. The people who manage to struggle through persistent paralysis and eye issues, and eventually make it to a better place, tell us that even if the initial outcome is less than you hoped for, patience and perseverance can get you there in time. Knowing both, that good outcomes are possible, and that bad outcomes can be overcome, is the real reason that every new patient should head into treatment hopeful and inspired.

I read your web site on Bridget last year, and it was great to see the update on her 2nd birthday. I wish I could say that I admire the strength and spirit you and your family show having Bridget in your life, but it wouldn't be quite honest. In fact, my real feeling as I read about Bridget is one of simple jealousy - it make me think "I want a Bridget in my life too." So I end up feeling that you are just plain lucky to have her. She is a wonderful example of all that is joyful and inspiring about being a part of the human race.

Best wishes,

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

 


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