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Author Topic: 8 Month MRI Shows Growth!  (Read 3867 times)

Jwh

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8 Month MRI Shows Growth!
« on: July 08, 2008, 06:17:57 am »
Well went yesterday for my MRI on my regrowth after having Retro surgery in 2001.  I found out in 2007 that in fact I had a regrowth now I've been waiting and watching.  Doc said yesterday it's time to do something about it once again as my MRI has shown growth. My tumor is now approx. 1 cm and kissing the brain.

 I'll probably go in for Translab at NYU in October.  I can't believe I have to do this once again.  Wishing there was a magic pill to get rid of this thing once and for all!

Thanks for listening.
Jen

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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)

Omaschwannoma

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Re: 8 Month MRI Shows Growth!
« Reply #1 on: July 08, 2008, 06:25:21 am »
Jen,

Just read your post this a.m. and want you to know how unhappy this makes me feel.  I'm so sorry you have to face this again.  I'm sure it's very upsetting and frustrating for you.  Was the first AN difficult to remove--what size was it?  If it's any consolation, I have heard the second time around for treatment isn't as bad as the first.  I hope you can find some kind of peace during this time.  Any thoughts on what your treatment will be?  Again, very sorry to hear this news. 
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1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

leapyrtwins

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Re: 8 Month MRI Shows Growth!
« Reply #2 on: July 08, 2008, 06:31:51 am »
Jen -

I can't believe you have to do this once again either and I'm sorry that you do  :(  If there were a magic pill, believe me I'd give it to you in a heartbeat.

The odds of regrowth are only 1-2%, so you certainly are a "rare" patient.  There is another member of the forum, ironically named "onceagain" that just had a second surgery due to regrowth.  You might find his posts helpful.

We are here to support you in any way we can.  Please keep us updated and let us known when you have a surgery date.

Hang in there,

Jan

« Last Edit: July 08, 2008, 07:21:37 pm by leapyrtwins »
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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

onceagain

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Re: 8 Month MRI Shows Growth!
« Reply #3 on: July 08, 2008, 07:16:45 am »
Jen
I also was told, at the end of March, that my AN had regrown after 12 years.  The first surgery was at the end of March in 1996.  I had never been told that I needed to moniter my AN with follw up MRIs.  Needless to say the floor fell out from under me.  The regrowth (3.5cm) was bigger than the first(1cm).  I had surgery on 6/4/08 and am so far recovering well with only(so far) minor post surgery symptoms(novocaine face).  I am to go back for an MRI in Aug.  The An is still wrapped around my facial nerve but DRs feel that I am a good candidate for watch and wait rather than radiation as originaly planned.  I am not sure what I am going to do at this point, all that I do know is that I want it GONE.   I don,'t think that I can stand being told that it is growing again( I also understand that there are no guarentees even if I do radiation now).  I wish you the best of luck and Drs as you deal with this ONCEAGAIN

Onceagain
Thom
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1.5cm left side AN removed Middle Fossa 1996
SSD
return of AN 3.6cm 2008

Catflower

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Re: 8 Month MRI Shows Growth!
« Reply #4 on: July 08, 2008, 07:30:48 am »
Jen:

I too am sorry to hear about your unhappy news about regrowth.  Hopefully, someone will discover that magic pill soon.  I had my surgery in April 2007 and they had to leave a small piece of the tumor to preserve my facial nerve.  I have my one year MRI scheuled next month and I'm nervous about regrowth.

Linda
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Jim Scott

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Re: 8 Month MRI Shows Growth!
« Reply #5 on: July 08, 2008, 08:06:13 am »
Hi, Jen:

I'm so sorry to learn of your re-growth, which is every AN patient's fear.  Although the odds of re-growth are quite small, statistics don't mean much when it happens to you.  You seem to be handling it well and of course, we all hope and will pray for a successful surgery, no complications and absolutely no re-growth, this time.  If you get a firm surgery date, please enter it on our 'treatment calendar'.  http://my.calendars.net/AN_Treatments

If you prefer, PM me and I'll be glad to enter it for you.

I had the surgery/radiation treatment that, to date, has proven to be very effective.  The AN is debulked (hollowed out) via surgery then zapped with successive low-dose radiation (26 30-minute sessions).  So far, so good.  My neurosurgeon has said this will be the preferred treatment in the future for large ANs, based on it's success.  We'll see.     

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.

Debbi

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Re: 8 Month MRI Shows Growth!
« Reply #6 on: July 08, 2008, 08:19:36 am »
Jen-

I am SO sorry to hear about the regrowth.  Please let us know when you're going back in.  Also, since I just had translab at NYU - who are your docs?

Prayers coming to you.

Debbi
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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

Jwh

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Re: 8 Month MRI Shows Growth!
« Reply #7 on: July 08, 2008, 09:08:52 am »
Thanks for your replies and support!  :)

Arushi to answer your questions my AN was 1.3 CM when I had it removed in 2001.  It was a very clear cut case as I was told by the docs and they were sure they removed the whole tumor.  The surgical reports says the tumor peeled right off. 

At this point in time I've been told a cell must have been left behind.  Lucky me! 

Regards, Jen
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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)

ppearl214

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Re: 8 Month MRI Shows Growth!
« Reply #8 on: July 08, 2008, 09:23:21 am »
Jen, I will only speak for myself, but that has to be one of the biggest "fears" during an AN journey.... chance of regrowth.  Although rare, we know that it can happen... and for me... truly... one of my fears during this journey we didn't ask to partake.

I send hugglez.... and wishes... and wish I could do more... but I'm cheering you on as you endure the next path.

Continued wellness wishes.
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"

Tamara

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Re: 8 Month MRI Shows Growth!
« Reply #9 on: July 08, 2008, 01:00:37 pm »
Didn't Carrie just have a "onceagain" surgery?  I know she has a thread going.  Sorry to hear about the regrowth - just curious why you are opting for translab this time?

Best wishes,
Tammy
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7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

LADavid

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Re: 8 Month MRI Shows Growth!
« Reply #10 on: July 08, 2008, 02:34:51 pm »
Hi Jen
I too am sorry that you have to go through it again.  I know what one in a lifetime is like -- I can't even imagine considering it again.  Has anyone suggested radiology as an option?

And yes, in answer to Tammy's question, Carrie did have two surgeries.

Best wishes,

David
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Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

cmp

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Re: 8 Month MRI Shows Growth!
« Reply #11 on: July 09, 2008, 04:24:27 pm »
Jen,

I responded to your other post before realiizing you are dealing with a regrowth. I'm so sorry--as Jim so aptly put it, knowing a regrowth is rare doesn't help a bit when you're the unlucky statistic.

I just had a regrowth removed (1.8 cm in feb of this year, 5 cm in 1989), and was told EXACTLY what you were--total removal then, must have been a stray cell left behind.

Did you have balance issues/loss of hearing or other post-op issues after your first surgery? The good news is that you may "get off easier" this time because your brain has already compensated for any nerves previously damaged/sacrificed. Even though I'm very achy and fatigued (16 days post op), since I don't have to deal with the balance/facial palsy issues , I can feel that I'm healing at the speed of light compared with last time around...

Please feel to PM me if you have any questions, and best wishes to you!

Carrie

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5 cm AN surgery, Shands Hospital, FL, Dr Albert Rhoton, 1988; VII-XII anastamosis for right-sided facial palsy 1989; diagnosed Feb 2008 w/ 1.8 cm recurrence; drs McKenna & Martuza; surgery rescheduled for 6/24/08!

MLB57

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Re: 8 Month MRI Shows Growth!
« Reply #12 on: July 09, 2008, 05:00:33 pm »
  :D Hi JWL,

I also had a 1 CM (RT AN) removed retro in Jan of 2001 (supposedly total removal) but re-growth was confirmed in 2006 to about the orig 1 CM size--mine was intracanicular. I had 30 FSR at Mass Gen last Fall--will have my one-year MRI Oct 8--have you considered radiation??  I know you mentioned it was "kissing" your brain--I can only speak for myself, but I am so glad that surgery wasn't my only option--I am hopeful this Fall my MRI will show no growth and/or shrinkage. 

Just wondering if you and/your MD discussed radiation at all...

I am sure you will make the decision you are most comfortable with...

FYI--Ted Kennedy is having radiation at Mass General and it's either the Proton Beam or LINEAC... (I had LINEAC)..

Best wishes, Mary from MA (one of the Maxwell Silverman's  Brunch Bunch!) ::)
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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!!

4cm in Pacific Northwest

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Re: 8 Month MRI Shows Growth!
« Reply #13 on: July 10, 2008, 08:07:57 am »
Jen,

Big HUG from Oregon State- being sent your way.

Daisy Head Mazy
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4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

al

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Re: 8 Month MRI Shows Growth!
« Reply #14 on: September 10, 2008, 12:00:13 pm »
Jen,

Don't know if you remember me - Al from Queens.  I haven't been on the website for quite a while.  Just had my 2 year check-up with Drs. G & R.

Write back to me to talk.

Al
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