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Author Topic: Uh oh  (Read 4720 times)

Raven

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Uh oh
« on: January 12, 2009, 02:26:46 pm »
Hi everyone,

Got an MRI and saw my Dr. for the usuall 6 month visit last Friday. Wasn't concerned one bit as I've been doing the best I have since the surgeries, thinking we would exchange pleasantries and out the door I go. Well wouldn't you know it that the remaining AN has grown about 2mm since my last visit. He wants to see me in four months rather then the usual six months. Needless to say, this has me a little concerned. Any growth found upon my next visit we need to do something, most likley radiation. I know radiation can cause swelling which can affect hearing, anybody have a bad out come with radiation, mainly the Gamma Knife?

Take care,

John
« Last Edit: January 12, 2009, 02:29:52 pm by Raven »
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7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

Cheryl R

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Re: Uh oh
« Reply #1 on: January 12, 2009, 02:53:58 pm »
John, Sorry to hear you are getting the  news that us NF2ers don't want to hear.       I can't give you much info about GK as my surgeon is against radiation.      I have heard of some who goes to Mayos and in some cases their dr will go for it.                     I had the extremely good luck with the mid fossa last April.      At the AN symposium Dr Slattery told about their approx 80% success rate in saving the hearing on smaller ANs on NF2s with mid fossa.                 I know how scary that chance is as if you remember I did no surgery until was already close to deaf.     I didn't want to lose it until was anyway,even with the cochlear implant option.                   I am already thinking of my April MRI and hope that nothing ever again shows up for me.                            I wish I had the answer for you.                    I will be thinking of you and hope for the best.
                                                       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

Keri

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Re: Uh oh
« Reply #2 on: January 12, 2009, 08:38:34 pm »
Hi John,

I am so sorry to hear about the more rapid growth of your AN. I'm still pre-op and new to this AN thing, so I can't offer any advice or real help.....

However, I'm am going to deduce that you are a B'more Ravens fan. I looked and saw Dr. Eisenman of U of MD Baltimore was your doc - he's mine as well. I've only met with him once, but he is doing my translab in a couple of weeks (along with Dr. Eisenberg).

My surgery is January 29th. I'm thinking I'll still be in the hospital for the Super Bowl (bummer). I'm hoping the Ravens beat the Steelers and make it to the Super Bowl!  Since you can see M&T Bank Stadium from the hospital, I'm thinking, gee, maybe all the Ravens fans will be at the stadium, and I can watch the Super Bowl from my itty bitty TV at the hospital, but see all the purple lights at the stadium and be celebrating with the Ravens!(in spirit, anyway).

Or maybe I'll just be in bed saying "ugh.... this HURTS!"

I hope and pray the best for you.

Keri
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1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

sgerrard

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Re: Uh oh
« Reply #3 on: January 12, 2009, 09:55:15 pm »
Hi John,

Sorry to hear about another 2mm growth. Hopefully the MRI in 4 months will not show more. Rather than comment on whether anyone has had a bad outcome with Gammaknife, I would like to look on the bright side and say many have had good outcomes with Gammaknife, and other forms of radiation for that matter. At this point, it is not unreasonable to be optimistic that if more treatment is required, your right side hearing can be preserved.

Best wishes,

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.

Raven

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Re: Uh oh
« Reply #4 on: January 13, 2009, 11:49:03 am »
Thanks Cheryl and Steve for your thoughts, guess I need to look thru all the posts about radiation.

Keri,

You will be in great hands with Dr. Eisenman, Dr. Eisenberg and the entire staff at University of Maryland Medical. Other then the cathater, I experienced little to no pain and my facial issues only lasted about a week. I've met with Dr. Eisenman numerous times and I'm very grateful I had someone like him perform my surgeries. Now........on to the more important issue. I am a die hard Ravens fan, purple blood came out when they opened me up............LOL........... on the slim chance the Steelers beat the Ravens, we have had a great seaason, beyond expectations. However it would probably make my AN grow some more if the Steelers get to the Super Bowl...............my tinittus is getting louder just thinking about that.

Good luck on Jan. 29th

John
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7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

Richard in Palacios

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Re: Uh oh
« Reply #5 on: January 23, 2009, 11:29:25 am »
Raven,
Sorry to hear your news.  As far as experiences with radiation, I am 7 months post op from SRS.  I think this is what they are calling the second generation Gamma knife because the procedure did use gamma radiation but was performed somewhat differently than the descriptions I've read previously.  I will take time and write up my whole experience with the process sometime soon and see what others say.  My outcome is still pending the year later follow up MRI but I have no complaints at all about the process.  Other than the "discomfort" felt from the attachment of the frame, there were no problems.  I am confident that the outcome will be what we sought and the development of the tumor has been arrested.  In my case, that is the best case scenario.  I'll be anxious to hear from your next visit and will keep you in mind and in prayer for good news.
Richard
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Was AKA "RED in Palacios". That account now inactive. Originally diagnosed in 10/06 9mm X 3.6mm Waiting and watching.
As of 4/08 15mm X 6mm.  No longer waiting and watching.  Had SRS 6/10/08 at Methodist Hospital in Houston

wendysig

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Re: Uh oh
« Reply #6 on: January 23, 2009, 01:26:06 pm »
Hi John,
I'm so sorry to hear you did not get the good news  you were expecting.  Hopefully, when you see your doc again in four months your MRI will show no further growth.

Best wishes,
Wendy
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1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

stoneaxe

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Re: Uh oh
« Reply #7 on: January 24, 2009, 12:28:03 am »
Tough news..I know all too well. After years of no growth my tumor jumped 5mm. The good news is that it hasn't shown any more growth since...at least at 6 months. I'm on a 6 month schedule now though for the next couple of MRI's. Hope yours decides to quit growing too.
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Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

Raven

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Re: Uh oh
« Reply #8 on: May 11, 2009, 02:04:49 pm »
UPDATE.............had my head examined (MRI) last Thursday and saw my Dr. the next day. He was very happy with the results (not as happy as I was) as the MRI showed no new growth on the reamining AN. He mentioned that the appearent growth last time could have very easily been the plus or minus error factor you get with MRIs.....................he wants to see me in six months.

John
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7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

Kaybo

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Re: Uh oh
« Reply #9 on: May 11, 2009, 02:29:19 pm »
Great news, John!  i know that you are so pleased!!

K
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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!

Jim Scott

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Re: Uh oh
« Reply #10 on: May 11, 2009, 03:37:04 pm »
Quote from: Raven on May 11, 2009, 02:04:49 pm
UPDATE.............had my head examined (MRI) last Thursday and saw my Dr. the next day. He was very happy with the results (not as happy as I was) as the MRI showed no new growth on the reamining AN. He mentioned that the appearent growth last time could have very easily been the plus or minus error factor you get with MRIs.....................he wants to see me in six months.

John:

I can't tell you how delighted I am to learn of this splendid news!  My one-year MRI showed some 'growth' but, following another MRI 3 months later, it was gone and was suspected to be post-radiation swelling.  The point is, I can truly relate to your elation with this new MI scan.  That being the case, congratulations! :)

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.

Cheryl R

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Re: Uh oh
« Reply #11 on: May 11, 2009, 06:30:52 pm »
 John Good to hear good news of your MRI!      I know how we can have so much of a worry with the NF2 and just want to hear nothing new and no growth!               I am glad for you and hope it continues!
                                                                         Cheryl R
Logged
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

msmaggie

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Re: Uh oh
« Reply #12 on: May 11, 2009, 06:44:38 pm »
Whew!!  Great news, John.
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Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

sgerrard

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Re: Uh oh
« Reply #13 on: May 11, 2009, 07:12:48 pm »
Excellent news!

Resume summer activities as planned. :)

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.

Kate B

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Re: Uh oh
« Reply #14 on: May 11, 2009, 07:24:02 pm »
Great News! Just what the AN group ordered for ya:-)  We all live and wait by our MRI results. I am glad that yours is uneventful as they say!

Kate
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Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/
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