Article on Tumor Size and Facial Nerve Outcome

[LizAN]

For the rare incidence of this gremlim there seems to be a heck of a lot of sites with a heck of a lot of information out there.

I tried hunting for the article and almost got sucked in to cyberspace with all the links that Google gave me so I had to give up. 

Good luck and hope that someone finds it. I can't sit here much longer now as I'm pretty dizzy from all the reading I've just done.  It would be easy to become an 'expert' on ANs with all the information at our fingertips.

Cheers,
Suu xxoo

Sucked into cyberspace?  That's hilarious, Suu!  Sometimes, it does feel like a vacuum!

I feel like I have a ton of information, but no real answers, as it's impossible to predict outcomes and by the time I know what mine is, it will be too late.

Hope your dizziness improves soon!

Liz

[LizAN]

One of the neurosurgeons I consulted with mentioned that there is a 10% increase in risk to the facial nerve, for every cm of tumor, i.e. a 1 cm tumor carries a 10% risk, whereas a 3 cm tumor results in 30% risk. Most of the neurosurgeons I saw concurred with the 30% risk for my 3 cm tumor, so it seems that they subscribed to this opinion. One gave me 100% chance of paralysis, because of my previous GK.

However, one must be careful whenever reading such stats. For example they don't always specify if this risk represents permanent facial paralysis, or just weakness, which may come back.
Some centres quote very high percentages of preservation of facial nerve, but if you read carefully they include the instances when the nerve is anatomically intact, but still does not function.

In my opinion you shouldn't worry about general statistics and broad statements, just focus on the statistics of specific teams, and make sure to ask what exactly they mean by facial nerve preservation.

My neurosurgeon mostly operates on large tumors (often larger than 3 cm), and he was very specific about his stats, which were 5% for permanent paralysis and 90% for some mild weakness (House Brackmann 1 or 2). He also said that in his experience it doesn't make a difference if the tumor has been previously radiated or not. Of course I liked the 5% much more than the 30% (and the 100%!) and I decided to have surgery with him. I only had minor weakness immediately after surgery, which disappeared within a few weeks.

Marianna

Marianna, that makes sense.  Thanks for clarifying.  Glad you had such a great outcome!

How do I get those stats for Dr. Slattery?  And which neurosurgeon does he work with?

Liz

[LizAN]

This is not the original article that I had found, but it does address the issue.
http://www.thecni.org/reviews/16-spring05-p16-day.pdf
Has anyone heard of Dr. Day or the Koos grading scale?  Interestingly, this page from House  (http://www.acousticneuroma.org/surgicalapproaches) seems to quote directly from the article, without actually referencing it.  Maybe it is the other way around.   

[ppearl214]

This is not the original article that I had found, but it does address the issue.
http://www.thecni.org/reviews/16-spring05-p16-day.pdf
Has anyone heard of Dr. Day or the Koos grading scale?  Interestingly, this page from House  (http://www.acousticneuroma.org/surgicalapproaches) seems to quote directly from the article, without actually referencing it.  Maybe it is the other way around.

Liz
Thank you for sharing these with us.  The first article is  one dating back to 2005 and there is updated info since then.  I knew of a NS Dr Day, formerly of Brigham Woman's in Boston (user: Sheryl is more familiar with him) but not sure if that is him.  Interesting that the HEI Radiation page, notes that there is no long term info available, when actually, there is, especially for GK, which has been around since the late 1960's. It is public knowledge that some of the drs at HEI are "anti-radiation" but that is fine.....  doctors will tout their "comfort levels" such as some radio docs will tout radio over surgery.  HEI is correct that the "average" cut off size for radio is 3cm although some radiation facilities are treating tumors slightly larger than 3cm, but that, on avg, is the cut off point.

It's up to us to be the best, well-informed patients we can be as each of our AN journeys are very individually unique.  No 2 journeys are the same and homework, homework, homework will hopefully pay off for each and every one of us.

Phyl

[LizAN]

This is not the original article that I had found, but it does address the issue.
http://www.thecni.org/reviews/16-spring05-p16-day.pdf
Has anyone heard of Dr. Day or the Koos grading scale?  Interestingly, this page from House  (http://www.acousticneuroma.org/surgicalapproaches) seems to quote directly from the article, without actually referencing it.  Maybe it is the other way around.

Liz
Thank you for sharing these with us.  The first article is  one dating back to 2005 and there is updated info since then.  I knew of a NS Dr Day, formerly of Brigham Woman's in Boston (user: Sheryl is more familiar with him) but not sure if that is him.  Interesting that the HEI Radiation page, notes that there is no long term info available, when actually, there is, especially for GK, which has been around since the late 1960's. It is public knowledge that some of the drs at HEI are "anti-radiation" but that is fine.....  doctors will tout their "comfort levels" such as some radio docs will tout radio over surgery.  HEI is correct that the "average" cut off size for radio is 3cm although some radiation facilities are treating tumors slightly larger than 3cm, but that, on avg, is the cut off point.

It's up to us to be the best, well-informed patients we can be as each of our AN journeys are very individually unique.  No 2 journeys are the same and homework, homework, homework will hopefully pay off for each and every one of us.

Phyl

Thanks, Phyl,

I was originally leaning toward CK, but after being in W&W and having my tumor suddenly take off, I just want to be able to put it behind me and not have to have annual MRIs for the rest of my life.  On the other hand, f I have long term residual negative outcomes from the surgery, it will be harder to put it behind me.  There are tradeoffs, and as you said each of our journeys is unique.

Liz

[leapyrtwins]

Interesting article, but not 100% true to life.

Like Jim I had no facial paralysis - at least no lasting facial paralysis.

My AN was approximately 3 cms and post op (retrosigmoid) I had slight paralysis for a day or two.  A dose of steroids cleared it up and it's never returned.

Jan

[lrobie]

Liz,

I see what you're saying about not having enough information to compare the different surgeries.  I would be more interested, though, in comparing the middle fossa approach statistics/outcomes of other top facilities.  I'm not sure why it only takes 3+ hours for translab.  Are they really that good?  Or, is it total time in your head...not counting the time it takes to get there.  I see where you say that sentence on facial nerve stopped mid-sentence.  Maybe I will mention that to someone.

I'm not sure about the size of the IAC, but I was told that my AN totally fills it.

Lisa

[LizAN]

Liz,

I see what you're saying about not having enough information to compare the different surgeries.  I would be more interested, though, in comparing the middle fossa approach statistics/outcomes of other top facilities.  I'm not sure why it only takes 3+ hours for translab.  Are they really that good?  Or, is it total time in your head...not counting the time it takes to get there.  I see where you say that sentence on facial nerve stopped mid-sentence.  Maybe I will mention that to someone.

I'm not sure about the size of the IAC, but I was told that my AN totally fills it.

Lisa

Hi, Lisa,

My understanding is that middle fossa is a much more complicated approach.  Just to get to the tumor takes longer than it does with translab.  I'm not sure I've actually read that anywhere, and I'd be interested in hearing what others know about it.  Isn't HEI known to be the best in the world at middle fossa?  Anyone have any actual statistics comparing the top facilities, surgeons, and their outcomes?

Have you chosen your surgical team yet?  When are you planning to go to House?  I may be there in late July, if I can make up my mind in the next couple of weeks.

I'm feeling very scared, but more and more resigned to the fact that I need treatment.  Surgery, while daunting, is currently my treatment of choice.  It's a front-loaded process, with the best chance of putting this whole thing behind me, assuming I don't wait until my facial nerve is compromised.  At least, that is how I am looking at it today.  There are no guarantees.     But I am grateful for the surgeons at House and their talents.

Reading back through my old posts, I noticed that I had mentioned a local surgeon telling me that, given the location of the tumor, it was probably "sticky".  I had no idea what he meant at that time, but now I do.  I had forgotten all about that, somehow.  This is something I will be asking Dr. Slattery about on Friday evening.  If they are likely to need to leave a piece of the tumor behind, I may need to reconsider my decision to have surgery and start looking at CK.  Seems like I could end up doing both.  I'm wondering how likely it is, with a tumor this small, that they would have to leave a piece of it behind to preserve the facial nerve.  Anyone have experience or knowledge on this topic?

Liz

[LizAN]

Interesting article, but not 100% true to life.

Like Jim I had no facial paralysis - at least no lasting facial paralysis.

My AN was approximately 3 cms and post op (retrosigmoid) I had slight paralysis for a day or two.  A dose of steroids cleared it up and it's never returned.

Jan

Hi, Jan,

Your story is very encouraging.  How much of your tumor was located in the IAC?

Liz

[lrobie]

Liz,

My surgery is scheduled with Drs. Friedman and Schwartz on July 18th.

Lisa

[leapyrtwins]

Your story is very encouraging.  How much of your tumor was located in the IAC?

Liz

I want to say all of it, but I'm really not sure.

It was on the 7th and 8th cranial nerves if that tells you anything.

Jan

[LizAN]

Your story is very encouraging.  How much of your tumor was located in the IAC?

Liz

I want to say all of it, but I'm really not sure.

It was on the 7th and 8th cranial nerves if that tells you anything.

Jan

That would be your facial and vestibulocochlear nerves.  How long is the IAC?  About 1 cm, I thought.  From the size of your tumor, I think it would have protruded from the canal.  Do you still have your pre-surgery MRI scans?  Was it shaped like an ice cream cone?

The way these things are measured, when they are both inside and outside of the canal, confuses me.  Do they just report the diameter of the spherical part, or do they report the longest dimension in any direction?

Liz

[mk]

Liz,

it depends on the radiologist. For tumors protruding in the CPA there are two possible ways: to report the size: Sometimes only the dimensions of the spherical portion inside the CPA are reported. This doesn't include the "tail" that extends in the IAC.
Other radiologists report the Transverse (TD) direction, including the IAC portion. It is very easy to figure out if they do this:
If you see something like 2.0x2.2x2.1 cm (i.e. similar dimensions in all three directions), this indicates a mostly symmertical shape, and most likely represents the spherical portion only. If you see say 2.8x2.2x2.1, then most likely the 2.8 includes the IAC portion as well. In terms of volume, it doesn't make a big difference, as the IAC portion really has a very small volume compared to the CPA "cone". However in terms of dimensions it does seem very different, that's why sometimes people freak out thinking that there was growth, when the only thing that changed was the method of reporting.

In terms of location, most tumors that are larger than about 1 cm will generally start to extend to the CPA.

I hope this makes sense.

Marianna

[LizAN]

Liz,

it depends on the radiologist. For tumors protruding in the CPA there are two possible ways: to report the size: Sometimes only the dimensions of the spherical portion inside the CPA are reported. This doesn't include the "tail" that extends in the IAC.
Other radiologists report the Transverse (TD) direction, including the IAC portion. It is very easy to figure out if they do this:
If you see something like 2.0x2.2x2.1 cm (i.e. similar dimensions in all three directions), this indicates a mostly symmertical shape, and most likely represents the spherical portion only. If you see say 2.8x2.2x2.1, then most likely the 2.8 includes the IAC portion as well. In terms of volume, it doesn't make a big difference, as the IAC portion really has a very small volume compared to the CPA "cone". However in terms of dimensions it does seem very different, that's why sometimes people freak out thinking that there was growth, when the only thing that changed was the method of reporting.

In terms of location, most tumors that are larger than about 1 cm will generally start to extend to the CPA.

I hope this makes sense.

Marianna

That makes a lot of sense.  Thank you, Marianna!

[geexploitation]

LizAN,

I just came across this thread... if you remember the name Samii, that makes sense. Madjid Samii is a surgeon in Germany (Hanover? IIRC) who's a big, big cheese when it comes to brain surgery. The guy has had textbooks written about him and his techniques. He's been very good at what he does, but he's got to be over 80 at this point. If you need help wading through the articles, let me know. I've got a ton of them on my computer and might have the very article you initially read...

Regarding middle fossa and translab... I'm not sure about middle fossa and HEI in particular, but interestingly Brackmann (one of the older lights at House) seems to be one of the shapers of the translab approach. He's written a bunch of descriptive articles on it dating back to the 1980s that seem very partisan for that technique.

One facial nerve function: honestly, I wouldn't worry about the approach so much, but about the expertise of your surgeons and how vocally demonstrative they are about treating YOU and not just your TUMOR. You are a person who needs to have her face working properly -- they should demonstrate that their goal in surgery is to have your face working as well as possible. If they do that, you are going to get good care at any of the high volume, good reputation centers for AN surgery in this country.

The other thing about the facial nerve is that it's *very* robust compared to the auditory nerve. Even if you get beat up during surgery, it IS possible to get function back... even up to House-Brackmann level I (normal function).

Good luck, feel free to PM me if you want.