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Author Topic: another newbie? oh yes !  (Read 6073 times)

cnrnocn

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another newbie? oh yes !
« on: January 06, 2011, 06:39:03 pm »
Hi to everyone. I was diagnosed in Sept. incidental to an MRI. 2 mm on the left. I was told i could wait 6 months for another MRI- no real symptoms- occasional tinnitus-well, rarely- a feelling of fullness in that ear but I also swim so who knows? I live in Northern IN and was going to go up to Mayo for a second opinion after the next MRI- also I am a Neuro RN so i have a good understanding of the medical aspect- it's just that darn patient aspect that gets to me-LOL !  The first few weeks after diagnosis I would stay up late and listen to all music I could- afraid of the going deaf aspect- so I guess just checking in to say Hi and see if anyone had any info - I have the booklets and plan on going to the National Symposium. Any advice is more than welcome !!!
« Last Edit: January 06, 2011, 06:51:43 pm by cnrnocn »
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2 mm on left at the cerebellar-pontine angle
watch and wait

The woods are lovely, dark and deep
But I have promises to keep
And miles to go before I sleep
And miles to go before I sleep
  Robert Frost

BRO

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Re: another newbie? oh yes !
« Reply #1 on: January 06, 2011, 08:02:52 pm »
Well let me be on of the first of many to say hello and welcome.  Sorry you had to join our special club but what you will find here is a wonderful group of very caring folks who truly understand the new road you will be walking.  What is neat is that these folks just love to walk beside you.  Speaking of:  this is my very first post.  Shoot, you inspired me to start talking about my road.  So may I say thanks and let's walk together.
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August 2010 15mm right side

CHD63

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Re: another newbie? oh yes !
« Reply #2 on: January 06, 2011, 08:31:01 pm »
Well, hello and welcome to both cnrnocn and BRO!  Glad you both found us.  ..... and yes, you will find this forum a group of caring, supportive new friends who will walk with you through this time of research, searching for expert medical care, decision-making, treatment, and recovery.

Gather your questions/concerns and post away ..... no shortage of responses on here!   :o

BRO, tell us a little bit more about your situation .....

Many thoughts and prayers for both of you.

Clarice
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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

Kaybo

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Re: another newbie? oh yes !
« Reply #3 on: January 06, 2011, 08:40:56 pm »
WELCOME from TEXAS to you both!!  Even though everyone has different outcomes, we are not afraid to share it all here - the good, the bad AND the UGLY!!  This is a great group of people that are VERY caring and supportive - no matter where you are on the journey or what your situation/outcome in the end!

K   ;D
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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!

ppearl214

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Re: another newbie? oh yes !
« Reply #4 on: January 06, 2011, 08:47:34 pm »
Quote from: CHD63 on January 06, 2011, 08:31:01 pm
Gather your questions/concerns and post away ..... no shortage of responses on here!   :o

*looks at total number of posts that I have done over the years.......  :o  :o  :o *

yep, no shortages here! :)

Welcome to you both. Sorry to see that you join us.... but... thrilled that you have.  BTW, some of us will be in Cinci for the next symposium and look forward to meeting you there.

Again, welcome.
Phyl
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"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

BRO

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Re: another newbie? oh yes !
« Reply #5 on: January 06, 2011, 09:05:38 pm »
My journey began when I woke up back in May of last year and couldn't figure our which way was up, down or sideways.  Weirdest sensation I ever had.  Could not focus eyes and deaf in right ear.  Did I go to the Dr?  I'm a man and this little ear infection won't slow me down.  That afternoon I asked my frantic wife to carry me to the ER.  Carry was the word as walking was not a good option.  Valium and steroids are wonderful but not for my new friend.  It was suggested that there may be something more to this and I agreed.  Made an appointment with Dr. John R.E. d***ens.  He is listed on this site.  Hearing test, MRI and poof (15mm AN) just appeared out of nowhere.  Once my equilibrium returned 5-6 weeks my only symptoms are some loss of hearing in right ears, moderate tinnitus , watering of eyes(who knows) and slight balance issues if I turn quick.  I did have severe headaches for a couple of weeks but none in the last 3 months.  Watch and Wait until my next MRI ( February 2011)  Has anyone used Dr. d***ens that can let me know what's what.  He seams great.  You'll love this one.  My job is a project manager with a construction firm and I spend 50% of my time on roofs.  I told my Dr. and his OH MY response let me know that this may become a challenge down the road.  Thanks for listening
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August 2010 15mm right side

leapyrtwins

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Re: another newbie? oh yes !
« Reply #6 on: January 07, 2011, 12:07:29 am »
My best advice to both of you - other than stick around the Forum, it's a great place  ;D - is contact the ANA for the informational brochures.  They are very helpful and not written in medical-speak.  Heck, even I could understand them  ;)

Bro, if your doc is listed on this site - on the ANA main page - it means he's got a lot of experience with ANs and that he belongs to a Center of Excellence.  The ANA designates docs and facilities as Centers of Excellence if they pass a certain set of criteria.  I'm a little foggy on the specific criteria, but I can say with confidence that it's highly relevant to AN treatment.

Cnr, if you don't find what you're looking for at Mayo and want yet another doc to consult with I have an excellent neurotologist in the Chicago area.  If you'd like more info., just PM me.

Jan
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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

cnrnocn

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Re: another newbie? oh yes !
« Reply #7 on: January 07, 2011, 12:33:37 am »
Gee so nice of you all to reply so quickly--this appears to me to be a great group !!!  Am looking forward to Cincinnatti --you know right after diagnosis I went on youtube and saw videos  patients posted post-op and I  got really terrified--- :'( ---then I went to a support group meeting and found this site and I feel a heckuva lot better about the situation.. :)
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2 mm on left at the cerebellar-pontine angle
watch and wait

The woods are lovely, dark and deep
But I have promises to keep
And miles to go before I sleep
And miles to go before I sleep
  Robert Frost

leapyrtwins

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Re: another newbie? oh yes !
« Reply #8 on: January 07, 2011, 12:38:04 am »
Terrified is a common emotion after being diagnosed with an AN.

And there are definitely some scary stories, but there is life after an AN.

Everyone's AN Journey is unique.

Keep the faith  :)

Jan
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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

Cheryl R

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Re: another newbie? oh yes !
« Reply #9 on: January 07, 2011, 09:17:45 am »
There have been several nurses on here over time who have had ANs.      I think most have had surgery.    Also 2 drs.     I am now a retired nurse who was found over time to have NF2 so have had 3 tumors and 4 surgeries.       I retired right before my last surgery.       I was back to work 2 mos after the other surgeries.             I was only a med surg nurse in a small but busy hospital in central Iowa.         Also with Jans Chicago is Univ of Iowa at Iowa City and wonderful neurotologist Dr Bruce Gantz.     There have been many from out of state to there and several of us on here over time.        I have heard Iowa does more ANs than Mayos but do not know for sure if that is true.          Radiation can be done at Mayos and not at Iowa and Gantz is the usual pro surgery dr. 
    It is scary for a nurse to be the pt but one does understand more what a pt does feel like esp with chronic conditions.      We also have a tendency to ask all kinds of questions to who is doing our care post op.   
      This site is wonderful.      This year will be my 10 yr annivsery of my first AN surgery and no forum was around in this form so hard to find others to help.       I did come across some ANers and it was wonderful to be able to ask what weird feelings was normal post op.      I was lucky to be not dizzy, and not much pain and up walking on my own soon after.         There will be balance problems which do improve with making sure one is moving as they can be.      Being tired is another usual post op issue.
It all DOES get better in time.                 Ask all the questions you want here.       Ones family does not understand exactly how we feel pre and post op so here is such a big help.                       I wish you well!                  Cheryl R
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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

Jim Scott

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Re: another newbie? oh yes !
« Reply #10 on: January 07, 2011, 03:09:48 pm »
BRO/crnnocn ~

A slightly belated welcome!  I can tell that you both already know the value of the ANA website, these forums and local AN support groups.  We're sorry you were diagnosed with an acoustic neuroma but glad you discovered this website and choose to participate on the discussion forums.  I don't have any specific advice to offer other than to continue your research and use this website and the forums as a resource.  We have many AN patients who've experienced good outcomes from AN surgery (Jim smiles and raises his hand) as well as some folks who are struggling - and some who are emerging from post-op/radiation complications.  It's a good mix and we're all supportive of each other, no matter our individual situation.  You'll fit right in.  :)

Jim
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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.

suboo73

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Re: another newbie? oh yes !
« Reply #11 on: January 08, 2011, 06:25:46 am »
Quote from: cnrnocn on January 06, 2011, 06:39:03 pm
...also I am a Neuro RN so i have a good understanding of the medical aspect- it's just that darn patient aspect that gets to me-LOL ! 
Quote from: BRO on January 06, 2011, 08:02:52 pm
So may I say thanks and let's walk together.


crnnocn/BRO,

Welcome from Virginia!  Sorry you have a diagnosis of AN - but this group is FANTASTIC, so we hope you stick around for awhile!
I have been in 'automatic' Watch & Wait (W & W) for over 14 years now; but i wouldn't be here with out my sister's rapid diagnosis in summer 2008.
Funny how things happen...!

BRO - i LOVE what you said about walking together.  Made me pause and say a quiet thank you prayer for ALL on the Forum.
crnnocn - my daughter is studying nursing and is in her senior year...  With some recent health issues, however, she is driving me nuts - the worst patient ever, not taking charge of her own situation!  I can't believe this ol' mom is explaining to her how to 'begin at the beginning' to find out what's going on.  It was so refreshing to read your post and know that hopefully she will start taking better charge of her health.

Again - welcome!

Sincerely,
Sue
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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

LisaP

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Re: another newbie? oh yes !
« Reply #12 on: January 17, 2011, 05:44:33 pm »
Hi,

Greetings from Massachusetts, I am W&W since 08 with a small AN, best wishes on your journey, you will find this forum with a wealth of information.

LisaP ;D
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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

Mickey

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Re: another newbie? oh yes !
« Reply #13 on: January 18, 2011, 12:59:59 pm »
Greetings from NY! Its amazing how they can even spot a 2mm AN. In any case stay on top of things with much time to explore all your options and put this behind you. Alot of great people here with very much knowledge at your disposal. Everythings going to be allright, Best wishes, Mickey
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