Author Topic: It never gets easier....  (Read 4657 times)

Jwh

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It never gets easier....
« on: May 17, 2011, 07:33:05 am »
Hi!

Well yesterday was my 10th anniversary from my first AN surgery.  Today I will be scheduling a 2nd year follow up from my second surgery.....  I have a pit in my stomach just thinking about making that appointment.  It never gets easier.  I can't believe it's been a decade since my first surgery!  I guess this AN thing will always be a part of my life.  First indication of a problem mid 20's....now late 30's and still dealing with it. UGH.

Please send some positive vibes!

Thanks!
Jen
5/01  1.3 AN removed at NYU using Retrosig. Approach
2/07  Rediagnosed with Regrowth 8 mm (wait & watch mode)
1/09  1.4 AN removed at NYU using Translab (total tumor removal)

Kaybo

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Re: It never gets easier....
« Reply #1 on: May 17, 2011, 08:01:00 am »
Jen~
I know how it is always a bit unsettling to go in for follow ups...here's to a good report!!

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!

Cheryl R

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Re: It never gets easier....
« Reply #2 on: May 17, 2011, 09:06:57 am »
Jen,   I hope the MRI goes well for you!       I will be 10 yrs this fall and then had the more tumors and surgeries and you do still get that nervewracking feeling.    April is my checkup time and dread it.      The odds are that it will be fine but is hard to think positive.          I am alot older and has to be hard when you are a younger person.      I wish the best for you!         Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

nftwoed

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Re: It never gets easier....
« Reply #3 on: May 17, 2011, 09:31:03 am »
Hi Jen;

  My; You did have your time with a regrowth and second surgery!
  I'm NF-2, so have annual MRIs (2). This is the 10th year of my NF-2 Dx.
  Must say I get the pit in my stomach also and can't force it away. Would say also I've not read of many 3rd regrowths unless one has NF-2.
  I trust you will receive good care, whatever the outcome.
  I usually have a great lunch if MRI is in the morning, or gourmet coffee following an afternoon MRI.
  Move with this, and face it delibertly as possible, OK?
  God Bless... May He give you emotional and physical strength and fortitude.

kraynok2

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Re: It never gets easier....
« Reply #4 on: May 17, 2011, 09:34:13 am »
Jen,
  I think that throughout the years, this will enter our minds off and on.  I hope all will be well for you.  In my case, the AN was gone, but a parotid gland tumor showed up instead.  Try not to worry about it.  Think positively.  Good luck to you.  Sandy

Jwh

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Re: It never gets easier....
« Reply #5 on: May 17, 2011, 10:12:24 am »
All of your words mean so much to me.  It gives me a sense of peace knowing that you all can relate and help out in a time of need.  Thank you from the bottom of my heart.  I love hearing from all of you.
5/01  1.3 AN removed at NYU using Retrosig. Approach
2/07  Rediagnosed with Regrowth 8 mm (wait & watch mode)
1/09  1.4 AN removed at NYU using Translab (total tumor removal)

ksiwek

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Re: It never gets easier....
« Reply #6 on: May 17, 2011, 10:53:23 am »
Hi Jen,

I will be sending positive thoughts your way.  I am almost a year post op with 5 MRIs under my belt in the past 14 months.  I hated everyone of them   ;)  But, we have to believe that we can receive good news!  Easier said than done, I know.  I was diagnosed at 29 and I know that it is a long road of worrying about recurrence.  I am just doing my best to live life to the fullest  ;D 

Wishing you good results on this MRI and always!
Kris
Translab 6/4/10 for 4+ cm left AN.  Drs Friedman and Schwartz at HEI saved my life!
BAHA surgery on 10/7/10 with Dr Battista of Chicago Ear Institute (Oticon Ponto Pro)

dragonlady1030

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Re: It never gets easier....
« Reply #7 on: May 17, 2011, 12:03:30 pm »
Hi Jen,
It does get easier.  I am almost fifteen years out from my first surgery.  I have lived a very full and satisfying life.  In 2002, I had a recurrence that was treated with radiosurgery.  I have an MRI every year now, and feel pretty confident that there will be no more recurrences.  That's my plan, anyway....lol
Jerri-Lynn Peck

Jim Scott

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Re: It never gets easier....
« Reply #8 on: May 17, 2011, 02:08:41 pm »
Jen ~

It gets easier if you let it.  To my knowledge, if you have no symptoms, at some point doctors usually allow you to go to a 5 year MRI schedule.  I'm about to mark the fifth anniversary of my AN diagnosis and subsequent debulking surgery followed by FSR.  I was blessed with a marvelously talented, highly experienced and compassionate neurosurgeon who debulked my large AN and oversaw the follow-up irradiation, three months later (as planned).  I recovered fairly quickly and had my last MRI 3 years ago.  It showed the tumor was experiencing necrosis (cell death) and the beginnings of shrinkage.  I'm asymptomatic - and feel great.  I'm well aware that there may be some small risk of re-growth but because my AN had it's blood supply severed and was basically hollowed out, then radiated over 5 weeks (FSR), I'm pretty sure it's dead.  I refuse to fret about 'what-if'.  There is no benefit in that.  I'm not advising you to pretend you never had AN surgery, just not to allow yourself to be overwhelmed over what is only a possibility and not a probability.  Like a Vulcan, use logic.  Well, it works for me (and I don't have pointed ears).  ;)

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.

nftwoed

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Re: It never gets easier....
« Reply #9 on: May 17, 2011, 02:12:35 pm »
Hi Jim;

  V  "Live long and prosper".  : )

leapyrtwins

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Re: It never gets easier....
« Reply #10 on: May 17, 2011, 10:33:40 pm »
Good luck, Jen.

Thinking good thoughts,

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

Jill Marie

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Re: It never gets easier....
« Reply #11 on: May 17, 2011, 11:50:47 pm »
Hi Jen,  This time next year will be 20 years since they told me why I couldn't hear in my left ear anymore.  Believe it or not I haven't had an MRI since then, I was told that if I didn't have any symptoms then there was no reason to have the MRI.  I guess since my Facial Neuroma Tumor grew slowly(it grew over 30 years before it was removed) they didn't see a need.  Perhaps it's time I asked again.  Of course it's not something I want to do but if it means catching something in the early stages it's worth it. 

Yes, I live with the side affects of the surgery everyday, hearing loss, eye doesn't water so I use eye ointment 24/7, don't have a full smile.  On the bright side I've been married for 34 years, at the same job for 16 years (got the job 3 years after my surgery), have two wonderful sons, love to garden, hike, camp, Geo-cache and take long bike rides. 

I hope that your MRI shows that you had nothing to worry about!  Take Care, Jill :)
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

rayden1

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Re: It never gets easier....
« Reply #12 on: May 18, 2011, 01:24:49 pm »
Hi Jen

Just want to wish you all the best.

Ann x

suboo73

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Re: It never gets easier....
« Reply #13 on: May 22, 2011, 05:28:56 am »
Jen,

I too, want to wish you the best for a positive result from your MRI!

Me - i don't like small places, but have trained myself to realize that the MRI machine is what got the information i needed to understand my hearing loss.

Prayers all around for an uneventful trip through the 'tube!'

Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W