ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: alicia on September 28, 2009, 11:24:22 am
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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
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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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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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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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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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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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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 ;)
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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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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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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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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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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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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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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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Well said Alicia!
PM me anytime.
Michelle ;D
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Alicia ~
The fears that many AN surgical patients harbor regarding the potential growth of a 'sliver' of the tumor left behind is why my neurosurgeon (as he explained it to me) opted to only de-bulk my large (4.5 cm) AN, effectively removing it's blood supply but avoiding disturbing cranial nerves, then subjecting the remaining tumor (about 2.5 cm after surgery) to 26 FSR treatments intended to destroy it's ability to reproduce. As my signature shows: 'so far, so good'. My pre-op symptoms never returned and the last MRI showed necrosis and some slight shrinkage.
Of course there are never any guarantees and I realize that the de-bulked and radiated AN could re-grow. However, I believe that possibility is unlikely and, as you cogently stated, we cannot change that possibility so, like you and most others, I live my life with appreciation and a sense of blessedness. Besides, at my age, I have no illusions about living 'forever'. :)
Jim
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Alicia,
I'm glad I found this thread. I was wondering about how you were doing with the little bit left behind. Glad you're keeping us posted.
Keri
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Just thought I would update the "sliver" subgroup: my MRI last week showed a stable remaining tumor-no growth! Next MRI for me will be in 18 months. I hope everyone else has the same or better results with their next scan!
Erin
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That's great Erin! I am jumping up and down for you! Hope this allows you to relax and put this behind you for the next 18 months!
I need to make my MRI appt. soon, so will up date then! A
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I had my 1yr post op MRI about a month ago and found the same amt of tumor...5mm. I am glad it has not grown, but sure wish it was smaller. All back to normal except SSD/ringing!
Michelle - have you had yours yet?
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Hi All,
I wanted to respond to this thread. I am 3 weeks post opp and hanging in. I am soo impoving. The Dr. told me he left 3mm behind to save the facial nerve. I will have MRI in 6 months. I do hope with all my heart that I will see the tumor die. I have great hope that the blood supply was cut off. It is such a roller coater ride. This forum has been such a great help.
Sue
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Hi Sue, I am glad you posted here. Hope you are feeling better everyday. Your surgery was 1 day after my 1 yr anniversary! Believe me, time will fly. I can not grasp that a year has gone by already. For so long, when the topic of the surgery came up - it seemed so recent...now it seems long ago enough to lose importance!
Take care of yourself in the coming weeks, go slow and relax.
Here's to lonely little slivers shriveling! Life is a roller coaster isn't it ;)
Alicia
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Alicia,
Thanks for the positive input. Life is certainly a roller coaster ride. ::)
Sue
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I am 19 months post op and I was left with a sliver. My last MRI was in March 2010 and no growth.
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Anyone want to keep this post alive?
I have enjoyed rereading all the old posts from 2009 and 2010 and remembering everyone that helped me along the way!
My sliver was 5mm post op and is now 10mm. Considering Gamma Knife in the next few months.
I would love to hear other updates involving slivers!
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I too have a sliver left, not sure how large exactly Dr said it is tiny and not to worry about it. I am 5 months post op, have facial paralysis, tinnitus, balance issues and no hearing. (so much for saving my nerve and hearing!) In hindsight I wish I removed the whole thing and was just done with it.
My follow up MRI is due in Oct, I will post any findings then on size.
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My operative report stated 95% to 97% of the tumor was removed and I will have my 4th year MRI end of next month. I had two slivers, one on the facial nerve at the opening of the IAC and the other on my brain stem where the surgeon was unable to find a plane to dissect. My last MRI, 18 months ago, did not show enhancement of the sliver on my brain stem so I assume that portion died, I will ask about that on my app't for the scan result two hours after the MRI. There was no change in size on IAC portion of the tumor, but it did enhance so I assume it still can regrow. I'll post my results Sept 30.
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I had a reoccurrence in 2004 and had already lost the hearing from the first surgery done in 1996. Saving the facial nerve was my priority. Left with a good size sliver but surgery got it off the brain stem. Facial nerve is functioning. Followed up with FSR and tumor has remained the same size for 10 years.
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My surgery was 5/31/07 and no "slivers" were left behind. My docs told me that they removed my AN completely.
I realize that "completely" is a subjective term when it comes to ANs; even one small cell left behind can trigger regrowth, although the chances of that are around 2%.
But so far, so good. All my MRI's have been clean; I'm keeping my fingers crossed that my next MRI (due in 2017) is clean also.
Jan
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Hi Alicia
I'm really glad to see that you have revived the topic of slivers. I look here every so often to see how every one is fairing with their sliver over time. I am, however, sorry to hear that yours has acted up over the years. Was the growth of the 5mm all at once or was it a couple of mm over your MRIs over the years? Please keep us updated on what you decide to do treatment wise.
I had my 7 year post op MRI back in May and I'm so thankful that my sliver has remained stable over the years. I'm have been at two year scans for 4 years now. Every scan brings renewed anxiety. I have toyed with have radiation with the hopes of fully putting this behind me but my surgeon is strongly advising me to stay the course
I wish you the best of luck with what you decide to do regarding treatment.
Take care!
Erin
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I believe if a sliver is left behind the chances of regrowth are small like less than 4%
As a result there really is no need to radiate unless it grows....
There are restrictions on how much radiation you can have.. So being radiated once or possibly twice is normally the limit...
You don't really want to waste that option on something that might happen.
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As I understand it, the likelyhood of growth of a tumor remnant is correlated to the remaining tumor volume in cm cubed. I have read a few study results which indicate this conclusion. Off the top of my head, I think that if the volume of the residual tumor is less than or equal to .22cm cubed, the chance of regrowth is that of a full resection. However, like every thing else, we each have our own personal set of factors that effect our prognosis. For example, though my remaining tumor volume is less than .22 cm cubed, I am only 37, which according to my surgeon, makes him more concerned that my tumor will begin to grow at some point.
Hope all have a great day and take good care!
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I was told total tumor removal, but MRI was done post op & still showed 4-5 mm enhancement? So what was the point of having Retrosigoid surgery(original only 9mm)? I have suffered for 9 years with constant HA's, skull pain, partial facial palsy, eyelid does not close fully, etc!!!!
M
I was left in the pre-op holding area for 6 hours, while my surgeon Dr Evans fixed an emergency aneurysm or another patient. Dr Wilcox the neuro-otologist was waiting, waiting etc since that surgery had nothing to do with him, so I believe in retrospect he rushed thru my surgery & did a horrible job& basically ruined my life as I knew it!
The whole time I was waiting my wife thought I was in surgery. I should have been given the option to reschedule, but this never happened, I was just left in the pre op hallway, being a nervous wreck& talking to other patients going into surgery. Jefferson failed me all the way around!
Months in their headache clinic as a human drug guinea pig, and so many follow up visits to basically be told, we do the surgery, we don't try to fix your post op complications!
I have found an amazing MD who does accupuncture which has helped the HA's very much, but everything else has been unsuccessful.
Now 9 years later I'm having problems & need to get a mri to see what's up. I will NEVER go back to anyone at Jefferson for this.
Does anyone in the Philadelphia area have any experience with Dr. Lee @ Penn?, positive & negative would be appreciated.