Author Topic: Necrosis? Are you kidding me?  (Read 3792 times)

NancyMc

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Necrosis? Are you kidding me?
« on: April 02, 2009, 04:59:33 pm »
So, I get home from a wearing day of pre-admissions testing on the MGH campus, and in the mail (along with the Magic Scarf and journal which I have not opened yet) is my pre-op MRI report.  Notable are the unchanged dimensions (in spite of Dr. Barker's assessment of the films that the tumor had grown) and the suggestion that "The regions of bright T2 signal and decreased enhancement of the tumor are consistent with cystic or necrotic changes which were also observed on the comparison examination."
Is my tumor dying, and I am perhaps having surgery needlessly?  I'll never know.
Nancy
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

Mickey

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Re: Necrosis? Are you kidding me?
« Reply #1 on: April 02, 2009, 05:15:29 pm »
Very Interesting! Why can`t anything be possible? The way it came maybe the way it can go. In any case I guess its how do you feel? Keep us posted on what your going to do. Best Wishes, Mickey

NancyMc

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Re: Necrosis? Are you kidding me?
« Reply #2 on: April 02, 2009, 05:41:47 pm »
No turning back now.  All signed, sealed, and delivered.  OR on Wednesday morning at 6 sharp!
Probably cystic not necrotic.  No point in wondering.
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

MAlegant

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Re: Necrosis? Are you kidding me?
« Reply #3 on: April 02, 2009, 05:49:40 pm »
Nancy if it makes you feel any better they thought my tumor was cystic or necrotic but in fact it had wrapped around a bunch of nerves.  I've never regretted surgery. 
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.

NancyMc

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Re: Necrosis? Are you kidding me?
« Reply #4 on: April 02, 2009, 06:41:33 pm »
Oh, geez, that makes me feel a WHOLE lot better!   ;D
I guess I should be looking forward to a very long and complicated surgery.
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

MAlegant

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Re: Necrosis? Are you kidding me?
« Reply #5 on: April 02, 2009, 07:15:05 pm »
Not necessarily.  I had a relatively short surgery--4.5 or 5 hours--and a virtually complication-free recovery.  My tumor was not very sticky I suppose.
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.

NancyMc

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Re: Necrosis? Are you kidding me?
« Reply #6 on: April 03, 2009, 01:55:17 am »
That's a relief!
Thank you for clarifying.
Nancy
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

joebloggs

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Re: Necrosis? Are you kidding me?
« Reply #7 on: April 03, 2009, 02:35:34 am »
Nancy, my tumour was particularly cystic - about half of the inside was a big old cyst.  I had been told beforehand that cystic tumours are supposed to be sticky so I was thinking I'd have a long surgery but in the end it was only 6 hours and my facial nerve is fine and dandy.  Fear not - all will be well!
Right sided AN 2.7cm at last MRI.  Hearing loss/facial numbness.  Translab scheduled March 11th 2009.  Translab at Royal Melbourne Hospital, Australia successful!  Total tumour removed, SSD, no facial issues, numbness has left the building, balance issues but they'll get better and I'm loving life!

NancyMc

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Re: Necrosis? Are you kidding me?
« Reply #8 on: April 03, 2009, 06:05:53 am »
You mean I'm gonna look like you when I get out?  Whoopeeeeee!
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

joebloggs

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Re: Necrosis? Are you kidding me?
« Reply #9 on: April 03, 2009, 07:13:08 am »
ha ha... you hair will be less frizzy I reckon!  Seriously I wouldn't worry too much about the necrosis/cyst angle... they'll get the bugger out of there and then you'll be right!
Right sided AN 2.7cm at last MRI.  Hearing loss/facial numbness.  Translab scheduled March 11th 2009.  Translab at Royal Melbourne Hospital, Australia successful!  Total tumour removed, SSD, no facial issues, numbness has left the building, balance issues but they'll get better and I'm loving life!

SML

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Re: Necrosis? Are you kidding me?
« Reply #10 on: April 03, 2009, 05:38:36 pm »
Nancy,

My AN was also diagnosed as having necrosis in the middle. I asked Dr. Lee if that meant the rest of the tumor would die off by itself eventually. He out and out told me no.

Dr. Barker later explained the necrosis as a cyst filled with fluid that at some point the tumor may have bled inside and the fluid is just trapped in there. He also told me that having a cystic/necrosis tumor also can increase the size of the tumor not only by the live tumor cells splitting and dividing but also by having more fluid building up in the center, that is what made FSR (multi-session fractionated stereotactic radiotherapy) radiation treatment a non-option for me.

Fear not, your surgery is not for nothing!!

Scarlett
« Last Edit: April 03, 2009, 05:41:19 pm by SML »
SML(Scarlett)-Massachusetts
1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid 3/18/09 at MGH in Boston,MA.
Dr. Barker - Neurosurgeon, MGH - Dr. Lee - Neuro-Otology, MEEI
no facial issues, SSD right side, balance issues to work on.
Outstanding Surgeons, I'm very happy with the results.

NancyMc

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Re: Necrosis? Are you kidding me?
« Reply #11 on: April 04, 2009, 06:25:52 am »
Ooooo, Scarlett, all the gory details!   ;D ;D ;D  But thanks for that concise explanation.
I, too, determined FSR is no longer an option due to the cystic component mentioned after my October MRI.
I had always planned to have FSR should there be growth.  My films were on Dr Williams' (FSR guru) desk at Johns Hopkins for baseline review when he went to the gym and died of a heart attack.  It was a very sad time about eight years ago for many of his patients.
I forgot to tell Dr. Barker to take all the fat he wants.  Should I send him a note?
Oh, also, when I was in his office on Thursday, he said he had done an AN on Wednesday and had another one on Friday!
Nancy
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness