Author Topic: Leaving the "watch and wait" club  (Read 8384 times)

NickD

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Leaving the "watch and wait" club
« on: June 24, 2009, 04:22:01 pm »
Hi all,

I am scheduled for FSRT in August.

Best of luck to all...
Rt. AN diagonosed March 2007
March 2007 1.1 x 0.6 x 0.4 cm
March 2008 1.1 x 0.9 x 0.5 cm
March 2009 1.4 x 1.1 x 0.6 cm
Radiation (FSRT) scheduled for August 2009

Sheryl

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Re: Leaving the "watch and wait" club
« Reply #1 on: June 24, 2009, 08:20:06 pm »
Nick - best of luck to you and please keep us updated on how you are doing.
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

Dog Lover

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Re: Leaving the "watch and wait" club
« Reply #2 on: June 24, 2009, 08:33:42 pm »
FSRT? OK, maybe I'm having a brain fart, but what is that? Radiation?  ???

Whatever it is...good luck.

Cathy

PS. Aug is a lucky month -- I'm 1 yr post-op in Aug. !
« Last Edit: June 24, 2009, 08:35:39 pm by Dog Lover »
Cathy
9mm x 3mm Left Side AN
Mid Fossa Aug. 21, 2008
Dr. Gantz / Dr. Woodson
Univ. of Iowa Hospitals and Clinics
No facial issues, hearing saved, I keep active and feel back to normal.

Vivian B.

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Re: Leaving the "watch and wait" club
« Reply #3 on: June 24, 2009, 09:07:06 pm »
Hi Nick,

Glad you are finally having treatment. I assume it's radiation. Good luck and keep us posted on your recovery.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

NickD

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Re: Leaving the "watch and wait" club
« Reply #4 on: June 25, 2009, 01:55:55 pm »
Hi Nick,

Glad you are finally having treatment. I assume it's radiation. Good luck and keep us posted on your recovery.

Vivian

Thanks all, yes it is radiation...FSRT = Fractionated Stereotactic RadioTherapy. 50 Gy in 25 fractions over 5 weeks is the plan

Cheers,
Rt. AN diagonosed March 2007
March 2007 1.1 x 0.6 x 0.4 cm
March 2008 1.1 x 0.9 x 0.5 cm
March 2009 1.4 x 1.1 x 0.6 cm
Radiation (FSRT) scheduled for August 2009

Jim Scott

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Re: Leaving the "watch and wait" club
« Reply #5 on: June 25, 2009, 03:10:48 pm »
Hi, Nick ~

I wish you total success with your radiation treatments.

FWIW: I underwent FSR (26 sessions) 3 years ago to treat a surgically-reduced AN.  It was painless and relatively easy.  No head clamp, just a very tight-fitting plastic 'mask' that only bothers you if you're claustrophobic (I'm not).  The 'sessions' were uneventful - I drove to and from them, (a 60-mile round trip) and seem to have been successful.  My last MRI ('08) showed necrosis and shrinkage.  I hope you'll have a similar experience. 

Jim
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.

NickD

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Re: Leaving the "watch and wait" club
« Reply #6 on: June 25, 2009, 05:53:21 pm »
That's great Jim..just the experience I'm gunning for, thanks!

Hi, Nick ~

I wish you total success with your radiation treatments.

FWIW: I underwent FSR (26 sessions) 3 years ago to treat a surgically-reduced AN.  It was painless and relatively easy.  No head clamp, just a very tight-fitting plastic 'mask' that only bothers you if you're claustrophobic (I'm not).  The 'sessions' were uneventful - I drove to and from them, (a 60-mile round trip) and seem to have been successful.  My last MRI ('08) showed necrosis and shrinkage.  I hope you'll have a similar experience. 

Jim
Rt. AN diagonosed March 2007
March 2007 1.1 x 0.6 x 0.4 cm
March 2008 1.1 x 0.9 x 0.5 cm
March 2009 1.4 x 1.1 x 0.6 cm
Radiation (FSRT) scheduled for August 2009

leapyrtwins

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Re: Leaving the "watch and wait" club
« Reply #7 on: June 25, 2009, 08:17:09 pm »
Good luck, Nick.

Jan
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

frank

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Re: Leaving the "watch and wait" club
« Reply #8 on: June 26, 2009, 01:18:45 pm »
Good luck Nick.
You and I have about the same length of time in the W&W category and now you have decided to take some action. I too have  about decided to have Gamma Knife radiosurgery but I am still researching the "when" and "where to have it done" issues.
Another issue that is entering the picture for me is the question of changes that the Federal Gov't may be putting in place in the not too distant future. I am 71 and certainly wouldn't want some Gov't official determining that I am too old to have the procedure I want to have. I would rather have my problem behind me before the Government takes over the health care system in this country.
Was there any significant factor that caused you to make your decision? From your electronic signature it doesn't appear that your AN has been growing. Are you just sick and tired of the waiting? Perhaps you can let us know on these points.
Keep in touch and best of luck with your procedure.
Frank
4/07 MRI 8x5x6 mm  AN, RS  
Partial hearing loss and tinnitus 
4/08 MRI 10x5x5 mm
No additional hearing loss
4/09 MRI 1.2 cm , 6mm in AP dia, small mushroom shaped component into CB angle cistern. No additional hearing loss
Gamma Knife 11/09 Univ Hosp GK Ctr, Syracuse
Dr Hahn & Woods

NickD

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Re: Leaving the "watch and wait" club
« Reply #9 on: June 26, 2009, 03:07:10 pm »
Hi Frank,

Yes, I'm not much for "doing nothing" and mentally I'd had enough.  My biggest hurdle was waiting long enough that the specialists were satisfied the AN was growing and would therefore give the green light for treatment.  I had a typo in the sig..fixed now.  It's still small amounts of growth but I was dreading the annual MRI and the idea that it was still growing and my hearing was suffering.  I know that my hearing could get worse following the radiation but I'm hoping not.  WRT the feds, your country isn't mine (canada) so I can't really comment except to say that I don't have any worries along those lines.

Good luck Nick.
You and I have about the same length of time in the W&W category and now you have decided to take some action. I too have  about decided to have Gamma Knife radiosurgery but I am still researching the "when" and "where to have it done" issues.
Another issue that is entering the picture for me is the question of changes that the Federal Gov't may be putting in place in the not too distant future. I am 71 and certainly wouldn't want some Gov't official determining that I am too old to have the procedure I want to have. I would rather have my problem behind me before the Government takes over the health care system in this country.
Was there any significant factor that caused you to make your decision? From your electronic signature it doesn't appear that your AN has been growing. Are you just sick and tired of the waiting? Perhaps you can let us know on these points.
Keep in touch and best of luck with your procedure.
Frank
Rt. AN diagonosed March 2007
March 2007 1.1 x 0.6 x 0.4 cm
March 2008 1.1 x 0.9 x 0.5 cm
March 2009 1.4 x 1.1 x 0.6 cm
Radiation (FSRT) scheduled for August 2009

Mickey

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Re: Leaving the "watch and wait" club
« Reply #10 on: June 27, 2009, 08:07:07 am »
Hi Nick! It seemed that your AN was growing at minimal amounts each year. If mine was to do the same thing as yours I would probably do what your doing. I`m going for my MRI in AUG with no change so far going into my second year..  I feel good lets see what happens? In any case where are you having your treatment? Best wishes, Mickey

LisaP

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Re: Leaving the "watch and wait" club
« Reply #11 on: June 28, 2009, 05:32:05 pm »
Best of luck to you, keep us posted on how your new adventure goes!!

LisaP
Still W&W ;D
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

sgerrard

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Re: Leaving the "watch and wait" club
« Reply #12 on: June 28, 2009, 08:24:25 pm »
Hi Nick,

Slow as it is, it does seem like steady growth, doesn't it? I hope you do retain all or almost all of your present hearing. I remember you posted about hearing aids and your strong interest in listening to music. Hopefully the AN will not get in the way of that.

Best wishes for a great outcome.

Steve
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.

Lily

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Re: Leaving the "watch and wait" club
« Reply #13 on: July 06, 2009, 08:37:46 pm »
Hi Nick........... Good to hear you have made a decision for treatment.  I remember from past post that you have also seen Dr. Westerberg at St. Pauls in Vancouver.... Is it Dr. Westerberg's team that is doing the radiation as well?  How did you come to the determination of the radiation rather than surgery?  I have had a 2nd MRI in Feb. 09, and mine grew from 1.5 cm to 1.6cm, and Dr. Westerberg says to W&W another year.  Just wondering if you maybe saw another Dr. to help you with your decision.

I will be thinking of you, and sending wellness wishes for the procedure and that long term outcome be very positive.   Lily

wendysig

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Re: Leaving the "watch and wait" club
« Reply #14 on: July 16, 2009, 07:10:07 pm »
Nick,

Wishing you the best of luck with treatment.  Have you posted it on the AN calendar?  If not, please do so we can remember to wish you well that week and follow your progress.

Best,
Wendy

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!