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Author Topic: Let's talk slivers  (Read 17762 times)

alicia

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Let's talk slivers
« on: September 28, 2009, 11:24:22 am »
So after surgery, we know that it is not uncommon to have a "sliver" of the tumor left in order to save the facial nerve.  I knew this to be the case after my surgery.  After my 4 mo. MRI, I have found out I have 5mm still in there.  I know it is hopefully going to die because the blood supply from the balance nerve was removed, but...ya know...I am wanting other people's experiences.  Please chime in with all sides!  Thanks, Alicia
« Last Edit: September 29, 2009, 06:51:50 am by alicia »
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02/16/18 III to IV post GK Facial Paralysis
12/13/17 Gamma Knife
05/19/09 Translab Larger than expected - Drs used the word "tangerine"   House - Friedman and Schwartz
04/02/09 Diagnosed Left AN 3.2cm x 2.6cm x 2.7cm

Nani

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Re: Let's talk slivers
« Reply #1 on: September 28, 2009, 12:50:08 pm »
20% of my monster tumor remains.  I wish I could tell you more but I am looking for another doctor for a reason.
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- AN surgery 3-17-09. 3.8 x 5.1cm tumor.  1 month in the hospital and a couple in ST, OT and PT.

*People are always going to be behind you telling you you can't.  The important thing is to turn around and say 'watch me'.

Jim Scott

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Re: Let's talk slivers
« Reply #2 on: September 28, 2009, 04:06:51 pm »
Alica ~

I'm not certain my situation applies to what you're asking but, for what it may be worth, I'll submit my experience, anyway. 

I was diagnosed with a 4.5 cm AN.  The neurosurgeon I picked proposed that, to avoid facial paralysis and other problems, he would debulk the AN, that is, cut it down to a size small enough to radiate and in doing so, cut off the tumor's blood supply.  Following a 9-hour surgery (retrosigmoid) I ended up with a 2.5 cm AN - and no real surgical complications.  Then, 3 months later, I underwent 26 separate FSR treatments designed by my neurosurgeon and a radiation oncologist and intended to kill the remaining tumor's DNA.  As my signature states: 'so far, so good'.  I'm due for a new MRI scan but have been procrastinating.  However, my last MRI (8/08) showed definite signs of necrosis and some minor shrinkage of the remaining tumor.  So, I still have a small tumor but it's been irradiated and is responding to the radiation by conveniently dying. 

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.

epc1970

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Re: Let's talk slivers
« Reply #3 on: September 28, 2009, 04:52:02 pm »
Hi Alicia
I too have a "silver" left after surgery. My most recent MRI shows it is shrinking in size-why? I have no idea. I have been advised to not treat my "sliver" unless it shows signs of growth (50/50 chance of that) I have my next MRI in Mrach-1 year after my last one-if there is no growth them my next scan is in 18 months etc etc. (this is the route I'm planning on happening of course  ;)) If there is growth I will have fractionated proton beam with Dr Loeffler at MGH. I had a big tumor-3.8cm-and could not be more pleased with my surgery result even if it means I have my "sliver"!
Erin
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ilsemor

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Re: Let's talk slivers
« Reply #4 on: September 28, 2009, 09:52:07 pm »
Hello Alicia - Thank you so much for letting us know your concern, I also have the same situation, except I don't know how much was left and if the blood supply was cut, now I have another question to ask.  I had my surgery at House too with Dr. Slattery, I'll find out this Weds. when I go back for a follow up. 
I love this forum, I have found answers to almost all my questions, THANK YOU TO EVERYONE WHO PARTICIPATES!
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OTO

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Re: Let's talk slivers
« Reply #5 on: September 28, 2009, 11:01:54 pm »
It's typical if the tumor sticks to the nerve, that they may leave some behind.   Depending on the surgery type, they have less access to the facial nerve too, so they may leave some tumor material behind.  They do cut blood supply to the tumor, so they don't expect it to re-grow.  I had no regrowth on my 6 mos MRI, and will go back soon for another MRI.
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alicia

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Re: Let's talk slivers
« Reply #6 on: January 22, 2010, 09:34:52 am »
Just wanted to freshen this thread...I have seen a few others talking about this topic and thought it would be nice if everyone would follow the same thread so we can keep track of everyone's "sliver" updates.

So far I have found these people with tumor left behind...
Kelly718
epc1970
Jim Scott
jazzfunkanne
Nani
ilsemor
Anissa
mimoore
tenai98

I am happy to see that some of you have shrinking!! Here's to dying tumors  ;)
« Last Edit: January 25, 2010, 06:35:28 pm by alicia »
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02/16/18 III to IV post GK Facial Paralysis
12/13/17 Gamma Knife
05/19/09 Translab Larger than expected - Drs used the word "tangerine"   House - Friedman and Schwartz
04/02/09 Diagnosed Left AN 3.2cm x 2.6cm x 2.7cm

epc1970

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Re: Let's talk slivers
« Reply #7 on: January 22, 2010, 05:00:31 pm »
Hi Alicia
I will have a fresh "sliver" update on 3/1 when I have my next scan. Personally, I am praying for continued shrinking. When do you have your next update? Is it possible for  the sliver to die all on it's own? At my last appt almost a year ago my Dr said the tumor was "collasping in on itself" but did not mention dying....and dying on it's own would be just fine with me!
Erin
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alicia

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Re: Let's talk slivers
« Reply #8 on: January 25, 2010, 01:43:53 pm »
Hi Erin - I will be thinking about you on March 1  ;)

My doctor's hope is that the sliver will die because it has been removed from it's blood supply (the balance nerve).  Do you have a measurement of what was left behind following surgery or of what showed on your MRI last year?  My 4 month post op showed 5mm - approximately what he left in there.  My next MRI will be my 1 year post op in May.

Keep us posted!  Alicia
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02/16/18 III to IV post GK Facial Paralysis
12/13/17 Gamma Knife
05/19/09 Translab Larger than expected - Drs used the word "tangerine"   House - Friedman and Schwartz
04/02/09 Diagnosed Left AN 3.2cm x 2.6cm x 2.7cm

epc1970

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Re: Let's talk slivers
« Reply #9 on: January 25, 2010, 02:05:34 pm »
Hi Alicia
Mine is about the same as yours at 7mm. I cannot remember what my first post op-Nov of '08-one showed but I do know that my last scan last March was smaller at 7mm. Here's to dying slivers! I will let you know what my March scan shows.
Erin
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mimoore

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Re: Let's talk slivers
« Reply #10 on: January 25, 2010, 05:30:05 pm »
5mmx9mm left too!
My sliver is attached to the facial nerve so is it not getting blood supply from that? It all started with one bad cell so I am a bit nervous for my MRI in May.
Michelle  ???
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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.

epc1970

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Re: Let's talk slivers
« Reply #11 on: January 25, 2010, 05:46:15 pm »
Michelle
That is a good question about blood supply from the facial nerve...I'm curious about the answer becuase I have no idea! I totally understand your anxiety about your upcomming scan. I try hard not to think about it and most days I succeed but some days it gets in. Please keep us posted on how it goes.
Erin
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tenai98

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Re: Let's talk slivers
« Reply #12 on: January 25, 2010, 06:18:15 pm »
ok here is my story
Nov/08...tumor size 1.4cm
translab April/09 Where surgeical trascript states two small strands left behind to protect facial nerve
1st MRI 6 months  post op tumor is showin 1.6cm
next MRI due next month...
whether tumor is growing or it wa bigger going into surgery (transcript states mediuim size 1.8-2.0cm) I dont know...
I'll leave it alone if no more growth, but once it starts to grow again, I'll be looking at more treatments
JO
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14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

alicia

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Re: Let's talk slivers
« Reply #13 on: January 25, 2010, 06:47:44 pm »
Michelle - My understanding is that my tumor was rooted on the balance nerve.  So by removing that, it removed the blood supply.  My sliver is also the shell part that was attached to the facial nerve, but not rooted there.  But I agree that one cell can turn into another and it seems logical (in my fear of brain tumors mind) that it can reroot to get another blood supply  ??? 

This is exactly why I needed to find you sliver guys so we can talk about this  ;)

It is important, however, not to dwell on something we can not change!  It is difficult knowing we still have this tumor inside, but I hope it reminds us to appreciate everyday and keep our priorities in check.

In my opinion, this was a warning to live my life the way I desire and not waste a day thinking I will live forever.  Some people don't get a warning.

Alicia
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02/16/18 III to IV post GK Facial Paralysis
12/13/17 Gamma Knife
05/19/09 Translab Larger than expected - Drs used the word "tangerine"   House - Friedman and Schwartz
04/02/09 Diagnosed Left AN 3.2cm x 2.6cm x 2.7cm

mimoore

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Re: Let's talk slivers
« Reply #14 on: January 27, 2010, 03:26:23 pm »
Well said Alicia!
PM me anytime.
Michelle  ;D
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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.
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