Author Topic: 6 Month MRI..Pity Party.  (Read 8735 times)

sgerrard

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Re: 6 Month MRI..Pity Party.
« Reply #15 on: December 05, 2008, 10:18:34 am »
When calculating the radiation dose, at least with GK, the dose is actually larger for small ANs, than with larger ones.

I think that is true for how many Gy you are getting (12 or 13 with GK, 5 or 6 per day with CK). However, the Gy (gray) is a unit of radiation per kilogram, roughly the same as a unit of radiation per volume. The total amount of radiation for a larger AN will be higher, even if the number of Gy's is lower, since there is more volume to radiate.

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.

Jim Scott

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Re: 6 Month MRI..Pity Party.
« Reply #16 on: December 05, 2008, 12:02:57 pm »

Jim what is FSR?

MIchelle: 

FSR is the acronym for Fractionated Stereotactic Radiosurgery.  Basically a series of brief (20 minute) 'low-dose' radiation treatments spread out over time (weeks) to give the surrounding brain tissues time to recover between doses.  I underwent this procedure and it was painless with no side effects and, I might add, very successful in my case.

Here is a link to the Johns Hopkins website that offers a detailed explanation of FSR.  Better than anything I could write.  I hope it is of some help to you.

http://www.radonc.jhmi.edu/radiosurgery/treatmentoptions/stereotacticradiosurgery.html

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.

wendysig

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Re: 6 Month MRI..Pity Party.
« Reply #17 on: December 05, 2008, 07:29:46 pm »
Hi Michelle,
I am so sorry to hear so much of your tumor was left behind -- finding out the size must have been quite shocking.  It seems like you've gotten a lot of good advice and I dont really have anything to add, just a virtual shoulder to cry on, if need be.  Since you are having another MRI in 6 months, take this time to regroup and eventually look at this with fresh eyes, so to speak.  I would not say you are negative, overwhelmed maybe, but definitely not negative.

Best wishes,
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!

mimoore

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Re: 6 Month MRI..Pity Party.
« Reply #18 on: December 05, 2008, 07:47:38 pm »
Thanks everyone for listening to me whine. Yesterday I was overwhelmed and I had a down day but today is a new day. Life goes on and I choose to live my life to the fullest. I picked myself up, dusted myself off and I am ready to be strong again (with your help of course... thanks for being there).
Remember I am here for you too!
Hugs Michelle  ;D
Smiiling today.
What a journey this has been. Is that why they call us survivors?
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

MAlegant

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Re: 6 Month MRI..Pity Party.
« Reply #19 on: December 06, 2008, 12:03:14 pm »
Hey Michelle,
You know, what's left of your AN may not grow at all.  Hope springs eternal, I know....

It's okay to have a pity party, I've had more than I can count since surgery.  Glad you're past it but don't deny it when it comes, just wallow for a while until you're ready not to.

All best,
M
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

andrea in slc

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Re: 6 Month MRI..Pity Party.
« Reply #20 on: December 07, 2008, 12:39:31 pm »
Aw, crap Michelle! Just want you didn't want to hear, I'm sure!

The math wizes explained quite well, and yeah, I'd feel a little bit better just from seeing that.

Good luck, hang in there. You have every right to be having an "off day" after everything you've gone through! Here's some chocolate (yeah, healing properties, right?) and a (((hug))). Hope the future days are better with more healing!

LADavid

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Re: 6 Month MRI..Pity Party.
« Reply #21 on: December 07, 2008, 07:07:25 pm »
Aw Michelle.  Please know that you have the LA group pulling for you.

David
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

Captain Deb

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Re: 6 Month MRI..Pity Party.
« Reply #22 on: December 08, 2008, 05:52:18 pm »
Michelle, Please know that the nutcases over on the PBW and the good morning thread are pulling for you too!  We usually turn our pity parties into beach parties!

The last symposium lecture in Philly, during which I had a splitting headache so I don't remember too much, was about debulking tumors and following with radiation as a new treatment of choice for facial nerve preservation.  I think you may be able to get a CD transcript of the lecture through the ANA if you want to hear a little more information on the subject.  I think I can remember which one you need to get--I'll look it up if you want!

Hugs,

Dapt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

mimoore

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Re: 6 Month MRI..Pity Party.
« Reply #23 on: December 08, 2008, 08:00:00 pm »
Sorry about your head ache Debb.
I remember my doctor asking me about my head pain and said "So you have a head ache?" I remember looking at him with my dagger eyes and saying "Well it is more like an ice pick to the brain doctor" The word head ache is too mild to use for some of the pain I have experienced. We need to think up a new word for our head pain.

I would love more information on radiation after surgery if you can remember the name I will ask for a CD transcript.

Thanks for the kind words everyone! Honestly everyone else in my life thinks I am "back to normal". If only they could be in my head for one day...I wish the damn ringing in my ear would stop....today it is bad!
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

MAlegant

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Re: 6 Month MRI..Pity Party.
« Reply #24 on: December 08, 2008, 08:22:21 pm »
Michelle,
It's their version of normal vs. ours:  what they see is not the full story, but probably isn't with most people.  At least that's what I try to tell myself. Today I got a sharp pain near/in my incision during a meeting with a student and actually had to stop and say "ow".  The student was seriously worried.  I was not worried, however, evidence that my normal is anything but.  Normal is boring.
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Captain Deb

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Re: 6 Month MRI..Pity Party.
« Reply #25 on: December 09, 2008, 09:16:14 am »
Michelle,
The ANA Cambridge transcript link isn't working right now--I'll try later today or on my other computer later.   I'm sure I'll recognize the speaker's name and the title of the talk and I can get the title and link for the order of the CD for you. I was able to order the CD of the  headache workshop that I missed (due to my headache of course) and found it to be really helpful.

Capt Deb 
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

mimoore

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Re: 6 Month MRI..Pity Party.
« Reply #26 on: December 09, 2008, 04:55:47 pm »
Thanks Debb you are the best! I think it is important to arm ourselves with as much information as possible.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

Captain Deb

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Re: 6 Month MRI..Pity Party.
« Reply #27 on: December 11, 2008, 01:09:34 pm »
Michelle,
Link still not working, but I emailed the ANA and told them of the problem--shoould be hearing back from them soon!

Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW