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Author Topic: FSR Results-2 Year-MRI  (Read 4668 times)

Dealy

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FSR Results-2 Year-MRI
« on: July 23, 2008, 05:31:10 am »
Last Thursday I had my 2 year MRI and hearing Test after having FSR Radiation at Johns Hopkins-25 sessions . if you are reading this for the first time-My story- i am an Nf2. First surgery in 1988 in Left Ear for a 1.5 AN-no problems, but left me deaf in that ear. In 2005-due too numbness in right side of my face a 2.5 AN found in right ear. Never suspected this when I had my first surgery and AN. Was told the first was an isolated case.WRONG. Anyway chose FSR Radiation to try to save what hearing I have left in right ear-which is hardly any. I had an MRI in December of 2007. Hearing Left was 29% left-that was it. This MRI shows that Hearing Has improved by 10%. Tumor continues to shrink. Measurement in December was 2.3 x 2.1 CM. This time it was 2.1 x 1.8 CM. This is GREAT NEWS  for me-especially being an NF2. So that is my story. I will not get another MRI for another year now. I was getting one every 6 months. Too those facing this awful journey-their is hope-it does not matter if you choose surgery or radiation. i have been their with both. I am so happy and elated-Take Care for all my friends on this site. I do not post much anymore-However I just wanted to let those know who read this thread. NEVER-NEVER GIVE UP. I am a living testimony to that. Take Care ALL_RON
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ppearl214

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Re: FSR Results-2 Year-MRI
« Reply #1 on: July 23, 2008, 05:40:11 am »
Ron,

what do I say? :)  Congrats on the terrific news! you KNOW I send the continued healing hugglez and onward and upward for you!

Truly! Congrats! :)

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"

mema

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Re: FSR Results-2 Year-MRI
« Reply #2 on: July 23, 2008, 06:08:22 am »
Ron,

Great news!  I too just had my 2 1/2 year MRI and no growth.  An increase in hearing is wonderful.  That something we don't hear on the forum that often.  I don't post as often as I used to either.    Its not that I don't care about others, and whats going on.  For me I think theres a little fear to read about re-occurence.  Heres to a year of no worry.

mema
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6mm x 8mm left AN FSR 26 treatments Nov.-Dec.2005
MD Anderson Orlando, Fl.

sgerrard

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Re: FSR Results-2 Year-MRI
« Reply #3 on: July 23, 2008, 08:07:28 am »
Hi Ron,

Glad to hear the news. 2 years with continued shrinkage is a very good milestone to pass. Thumbs up on that! And some hearing has got to be better than none, so thumbs up on that too. Switching to the annual MRI means you are over the hump, so to speak. What the heck, thumbs up on that as well.

Thumbs up!

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.

jerseygirl

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Re: FSR Results-2 Year-MRI
« Reply #4 on: July 23, 2008, 08:56:32 am »
Ron,

This is great! Thanks for posting. Radiation and NF2 is the subject of great controversy so your results are actually very encouraging . I hope you will post again should anything change (for the better I hope)! Take care,

                    Eve

                               
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Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Omaschwannoma

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Re: FSR Results-2 Year-MRI
« Reply #5 on: July 23, 2008, 10:03:31 am »
 ;D  AWSOME news Ron!
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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

Jim Scott

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Re: FSR Results-2 Year-MRI
« Reply #6 on: July 23, 2008, 11:56:47 am »
Ron:

Please accept my congratulations on your 2-year MRI results.  That is great news, obviously.  That you've regained some hearing ability is even better.  Your story is definitely inspirational.  Thanks so much for sharing it with us and may your success continue. 

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.

mindyandy

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Re: FSR Results-2 Year-MRI
« Reply #7 on: July 23, 2008, 02:22:14 pm »
CONGRATS RON....That is GREAT news!!!!!!! ;D
I'm very happy to hear this...... ;D ;D
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14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

Dealy

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Re: FSR Results-2 Year-MRI
« Reply #8 on: July 23, 2008, 06:48:18 pm »
Thanks too Phyl-Mema-Steve-Eve-Arushi-Jim Scott-Mindy Andy- for your kind words and thoughts. My main message to people on this site is too be diligent. You see after my surgery in 1988- I put this whole AN thing behind me and did not follow up ever with MRI's I figured there was no need too to do. Well was I in for a surprize when another one shows up in 2005-by that time it is 2.5CM in size. Lord only knows how long that had been growing in my head without me realizing it. I am not trying to scare people by no means. Back in 1988 I was told my left sided tumor was an isolated incident. I knew about NF2's-and thought tp myself- "Man how awful to be one of those". The doctor who did my surgery back in 1988 told me too do MRI's every 5 years. Too save money- I had none. So my advice is-Be diligent and aware-and like I said before- Never-Never give up. I miss my hearing so much but I still have use of some hearing with the use of a Hearing Aid. As you have seen-that even improved some. It still is not easy- I still struggle with pain too the face my TN-but it is bearable. I still feel that I achieved my goal- I did not want my head opened up again-so I guess too this point I got my wish. Eve- I will post if their are dramatic changes. Like Mema- I do look at this site still every once in awhile. My heart goes out too those facing this for the first time. However- I look at it this way-explore your options and choose the best course and hospital and procedure that you will not regret. I followed the advice of one person-cannot recall now who that was- this person said do not let money -distance- etc. decide where you will go because this can be a life altering situation that you cannot change. I decided on 25 sessions of FSR-and do not regret that decision-even though I had too fly all the way too Baltimore from Kansas. Yes- I realize it still can fail- but I achieved a milestone for me and made it 2 years now. I will not give up now but only look for a better life no matter the outcome or circumstances. Thanks All- Luv you guys- Ron
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Pooter

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Re: FSR Results-2 Year-MRI
« Reply #9 on: July 31, 2008, 10:51:03 pm »
Sorry that I am just getting to this, but congrats on the MRI results!  I pray for continued shrinkage and ultimate necrosis!  That's awesome!

Brian
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Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

calimama

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Re: FSR Results-2 Year-MRI
« Reply #10 on: August 16, 2008, 07:07:26 am »
Dealy...

Great news. Thanks for the advice and experience you shared with me when i was investigating FSR. I am glad this is working out for you and to find you in such great spirits.

All good things to you..


Trish
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Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

leapyrtwins

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Re: FSR Results-2 Year-MRI
« Reply #11 on: August 16, 2008, 08:48:19 pm »
Sorry, I've been delinquent also  :o

Congratulations, Dealy!  ;D

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

Sue

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Re: FSR Results-2 Year-MRI
« Reply #12 on: August 17, 2008, 08:43:58 pm »
Congratulations from me, too, Ron for your great MRI results.   I hope it just gets better and better for you.

Take care,

Sue in Vancouver USA
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Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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