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Author Topic: 8.5 years post FSR at Hopkins--doing great, still!  (Read 5016 times)

crazyauntjules

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8.5 years post FSR at Hopkins--doing great, still!
« on: April 28, 2010, 12:02:06 am »
Hi all ANers-

8.5 years ago i was posting and reading on the then, "AN Guestbook."  Got great help, and support and info.  And so, I am back to say I am sorry I have stayed away so long, and not reported back as much as I might have. 

I had my FSR at Johns Hopkins in Dec 2001.  Initially my tumor (7mm x 9mm) swelled a bit, but went back down to 8mm x 9mm.  I have had MRI follow ups for a couple of years at every 6 mos, then went to two year follow ups, and still doing well. 

I retained quite a bit of hearing, tho I do have some loss and tinnitus (i thought everyone just had that screeching in their ear, thought it was normal and had it quite a while before my diagnosis).  I had no other side effects from my treatment, indeed, sightseeing in DC and Baltimore with my family each day after treatment.  So, as you can guess, I am a proponent of FSR when it is an appropriate treatment.  My local small town ENT felt strongly that I should have surgery.  I did the research, and made a different choice...I chose radiation.

I wish you all good success with any treatment option you pursue.  No matter what treatment we choose, we will never know if another treatment would have been "better" or "worse."  We make the best choice we can and roll with the punches.  Hang in there, everyone, there is life after AN!     
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goinbatty

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Re: 8.5 years post FSR at Hopkins--doing great, still!
« Reply #1 on: April 28, 2010, 03:01:07 pm »
Great to hear you're doing well.  I was like you and went sight seeing every day after treatment.  I'll have to admit, it made dozing during treatment a bit easier being tired from all of that walking around DC. 
You're so right about making the best decision for oneself.  Deciding on the treatment option was the toughest part for me.  After that decision was made, it was like a huge weight had been lifted.  Only time will tell if we made the correct decision.  It was great getting to a point where I didn't focus on it every day.  That's not to say the tinnitus doesn't get irritating at times as well as hearing issues but life is good.
Sandra
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1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

Jim Scott

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Re: 8.5 years post FSR at Hopkins--doing great, still!
« Reply #2 on: April 30, 2010, 01:09:26 pm »
'Crazyauntjules' ~

Congratulations on your long-term FSR results!  Thanks for sharing this pertinent information with other AN patients.  As another AN patient who underwent FSR - with excellent results - I wish you continued success.

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.

NancyMc

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Re: 8.5 years post FSR at Hopkins--doing great, still!
« Reply #3 on: April 30, 2010, 02:12:13 pm »
Your post sure brought back memories.  I was diagnosed Sept 19, 2001.  I was on the AN Guestbook as well.  My doctors wanted surgery, but I researched as you did and decided to have FSR at JHU as soon as any growth occurred.  I suppose you were one of the fortunate ones who had Dr. Jeffrey Williams treat you.  My MRI films were on his desk waiting for review when he went to the hospital gym and never came back.  Truly sad.
Congratulations on your excellent outcome.
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Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

Cheryl R

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Re: 8.5 years post FSR at Hopkins--doing great, still!
« Reply #4 on: April 30, 2010, 02:46:34 pm »
My day was told AN for sure was August 14th,2001.    The MRI report said AN vs neuronitis.   My dr just came in and started talking about my tumor when hadn't yet been told it was for sure.   His bedside manner has improved.       I was on the guest book too.   Does this make us oldies but goodies?           Surgery wasn't till Nov 1.         
                                                          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

sgerrard

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Re: 8.5 years post FSR at Hopkins--doing great, still!
« Reply #5 on: April 30, 2010, 06:25:49 pm »
Quote from: Cheryl R on April 30, 2010, 02:46:34 pm
 Does this make us oldies but goodies?

Yes it does!  :D

Steve
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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.

JimmyD

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Re: 8.5 years post FSR at Hopkins--doing great, still!
« Reply #6 on: May 20, 2010, 12:05:59 pm »
Quote from: NancyMc on April 30, 2010, 02:12:13 pm
Your post sure brought back memories.  I was diagnosed Sept 19, 2001.  I was on the AN Guestbook as well.  My doctors wanted surgery, but I researched as you did and decided to have FSR at JHU as soon as any growth occurred.  I suppose you were one of the fortunate ones who had Dr. Jeffrey Williams treat you.  My MRI films were on his desk waiting for review when he went to the hospital gym and never came back.  Truly sad.
Congratulations on your excellent outcome.
I had my FSR at JHH buy Dr Williams in December of 99'.He was the reason I chose FSR over surgery.I figured being a board certified Nerosurgeon and Radiologist he had nothing to gain either way.When I drove down there to drop my Films off to Tammy Cuda I ran into him in the hallway.He was with several other Doctors,he stopped what he was doing shook my hand and looked at my films right there in the hallway.I was sold right then.It was tragic when I heard the news of his death.
Jim
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Glioma Tumor left optic nerve 1960,RS AN 2.2CM FSR 5 treatments @JHH by Dr Williams in 1999 & LS AN 2.6CM 30 treatments 2007 by Dr Brian Chon@Centra State,NJ.Blind in L.eye,deaf in R.ear.Test for NF2 came back negative.Doing OK.

NancyMc

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Re: 8.5 years post FSR at Hopkins--doing great, still!
« Reply #7 on: May 27, 2010, 07:04:21 pm »
I'm glad you benefited from his skill.  I remember Tammy as the contact person as well.  I felt very sad for his fiancee.
Stay well.
Nancy
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Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

moe

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Re: 8.5 years post FSR at Hopkins--doing great, still!
« Reply #8 on: May 28, 2010, 08:13:30 am »
Quote from: NancyMc on April 30, 2010, 02:12:13 pm
  My MRI films were on his desk waiting for review when he went to the hospital gym and never came back.  Truly sad.

So what happened to Dr. Williams?? I gather something happened in the gym- aneurysm, heart attack????
How tragic :'(
Maureen
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06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

NancyMc

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Re: 8.5 years post FSR at Hopkins--doing great, still!
« Reply #9 on: May 30, 2010, 09:58:05 am »
I've always assumed heart attack.  Yes, very unfortunate.
Logged
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

MLB57

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Re: 8.5 years post FSR at Hopkins--doing great, still!
« Reply #10 on: May 31, 2010, 07:02:47 am »
Hi Crazyauntjules,

Always glad to hear positive follow-ups from FSR patients from several years gone by.  It certainly makes me more than hopeful that this time, choosing FSR, was the right treatment to combat my AN...and it's great news for all others exploring their options for treatment..

As you said there is certainly life after AN...

Best wishes always,

Mary (one of Phy's Maxwell Silverman's Brunch Bunch)   ;D[/color]
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1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!
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