Article on Tumor Size and Facial Nerve Outcome

[LizAN]

Hi, everyone,

Last week, I read a study that showed the statistics for one particular surgical team, in Europe, regarding the size of the tumor when it was removed and the facial function score at one year post-surgery.  As I recall, it was a fairly small sample size.  Unfortunately, I can no longer find the article online.  Does anyone else have it bookmarked?  Are these same statistics available for the surgeons at House?

The study I read showed no damage to the facial nerve for tumors below 1.5 cm, if I recall correctly.  Since my tumor is now at 1.2 cm, but grew by 4.4 mm in the last 14 months, these statistics might help me make my decision about whether to have surgery this summer, despite my current lack of long-term disability insurance, or wait until next summer, when my disability insurance will have kicked in with my new job, but the tumor may have grown past the 1.5 cm mark.  The reason to do it in the summer is that my partner is a teacher and can travel to LA with me during the summer, without taking a pay cut.

My memory is fuzzy, but I could have sworn that my previous research led me to believe that the cutoff for an easy removal was 2.0 cm, not 1.5.  Can anyone shed light on this for me?

I have sent my MRI CD to Dr. Slattery and have an appointment to talk with him on Wednesday evening.  This is a very nerve-wracking time, as I'm sure you all know.

Thanks,
Lz

[CHD63]

Liz .....

I have not seen the study to which you are referring.  However, I cannot imagine the validity of such a study when so much depends on the specific location of the tumor (encroaching on the brainstem or touching the cochlea or anywhere between) and the shape of the tumor ..... in addition to dimensions noted on your MRI.

I would trust Dr. Slattery's opinion, if I were you ..... but I would also tell him you had heard this about 1.5 cm being some kind of breaking point and see what he says about the advisability of you waiting in your particular situation.

All of the docs at HEI are excellent, by the way.

Clarice

[Suu]

G'day Liz.

Although it's too late for me to read a study on AN percentages, I would assume that the smaller the AN the better the outcome with whatever one's surgeon suggests.

If you find this study then it would be a good read for others to maybe help with their decision too.

I wish you the best of luck with your journey into being post-AN.

Hugs,
Suu xxoo

[ppearl214]

Liz

Can you post a link here to the study you are referencing so we can see it?

thanks!
Phyl

Hi, everyone,

Last week, I read a study that showed the statistics for one particular surgical team, in Europe, regarding the size of the tumor when it was removed and the facial function score at one year post-surgery.  As I recall, it was a fairly small sample size.  Unfortunately, I can no longer find the article online.  Does anyone else have it bookmarked?  Are these same statistics available for the surgeons at House?

The study I read showed no damage to the facial nerve for tumors below 1.5 cm, if I recall correctly.  Since my tumor is now at 1.2 cm, but grew by 4.4 mm in the last 14 months, these statistics might help me make my decision about whether to have surgery this summer, despite my current lack of long-term disability insurance, or wait until next summer, when my disability insurance will have kicked in with my new job, but the tumor may have grown past the 1.5 cm mark.  The reason to do it in the summer is that my partner is a teacher and can travel to LA with me during the summer, without taking a pay cut.

My memory is fuzzy, but I could have sworn that my previous research led me to believe that the cutoff for an easy removal was 2.0 cm, not 1.5.  Can anyone shed light on this for me?

I have sent my MRI CD to Dr. Slattery and have an appointment to talk with him on Wednesday evening.  This is a very nerve-wracking time, as I'm sure you all know.

Thanks,
Lz

[LizAN]

Liz .....

I have not seen the study to which you are referring.  However, I cannot imagine the validity of such a study when so much depends on the specific location of the tumor (encroaching on the brainstem or touching the cochlea or anywhere between) and the shape of the tumor ..... in addition to dimensions noted on your MRI.

I would trust Dr. Slattery's opinion, if I were you ..... but I would also tell him you had heard this about 1.5 cm being some kind of breaking point and see what he says about the advisability of you waiting in your particular situation.

All of the docs at HEI are excellent, by the way.

Clarice

Clarice,

I hear what you are saying about the location and shape of the tumor.  In my case, it now extends completely from one end of the canal to the other and is beginning to exit the canal on the brain stem side.  I will ask Dr. Slattery about it.

My primary consideration at this point is facial nerve preservation.  At the volume of my recent hearing test, I had no speech discrimination in the affected ear whatsoever - 0%.  I don't have complete faith in that test, as it was done by an intern.  That said, hearing preservation doesn't feel as important as other things now, so I will probably opt for translab, unless Dr. Slattery has a reason I should not.

I do remember where I got the 2.0 cm number, which was the original number I had in my head prior to reading that facial nerve preseravation was most likely below 1.5 cm.  2.0 cm is the cutoff for middle fossa.

Liz

[LizAN]

G'day Liz.

Although it's too late for me to read a study on AN percentages, I would assume that the smaller the AN the better the outcome with whatever one's surgeon suggests.

If you find this study then it would be a good read for others to maybe help with their decision too.

I wish you the best of luck with your journey into being post-AN.

Hugs,
Suu xxoo

Yes, Suu, taking it out while it is as small as possible certainly makes sense, which is why I am beginning to lean toward having surgery this summer and just getting it over with.  <Very Big Sigh>

Thanks,
Liz

[LizAN]

Phyl,

I wish I could post it!  Unfortunately, I did not bookmark it, and I can't remember the search terms I used, so I can no longer find it.  I was hoping someone else had it bookmarked and would post it for us.  I will keep looking.  I'd love for us to be able to discuss it in detail.

Liz

Liz

Can you post a link here to the study you are referencing so we can see it?

thanks!
Phyl

Hi, everyone,

Last week, I read a study that showed the statistics for one particular surgical team, in Europe, regarding the size of the tumor when it was removed and the facial function score at one year post-surgery.  As I recall, it was a fairly small sample size.  Unfortunately, I can no longer find the article online.  Does anyone else have it bookmarked?  Are these same statistics available for the surgeons at House?

The study I read showed no damage to the facial nerve for tumors below 1.5 cm, if I recall correctly.  Since my tumor is now at 1.2 cm, but grew by 4.4 mm in the last 14 months, these statistics might help me make my decision about whether to have surgery this summer, despite my current lack of long-term disability insurance, or wait until next summer, when my disability insurance will have kicked in with my new job, but the tumor may have grown past the 1.5 cm mark.  The reason to do it in the summer is that my partner is a teacher and can travel to LA with me during the summer, without taking a pay cut.

My memory is fuzzy, but I could have sworn that my previous research led me to believe that the cutoff for an easy removal was 2.0 cm, not 1.5.  Can anyone shed light on this for me?

I have sent my MRI CD to Dr. Slattery and have an appointment to talk with him on Wednesday evening.  This is a very nerve-wracking time, as I'm sure you all know.

Thanks,
Lz

[lrobie]

Liz,

Like yours, my AN is also located from one end to the other in my IAC, with it slightly protruding.  I am having middle fossa on July 18th at House with Friedman/Schwartz.  My AN is approximately 10.5 x 5.3 x 9.9 mm.   Even though I have some deficits in speech discrimination, I am choosing middle fossa as I still want to hear some sound...even if I can't understand what's being said.

As far as facial nerve outcome, House gives their percentages of post-op facial nerve function at www.acousticneuroma.org.  There's other good reading as well.  Look under House Clinic Perspective or read the entire site.

Lisa

[Jim Scott]

Liz ~

Perhaps I'm an anomaly but I was diagnosed with a 4.5 cm AN that was 'de-bulked' to approximately 2.5 cm preceding 26 FSR treatments.  Post-op, I suffered no facial nerve problems.  Admittedly, one AN surgery patient's outcome does not prove too much but I still have to differ with the conclusion that surgery on a smaller AN routinely offers a better chance of avoiding facial nerve issues.  Then again, I'm not a doctor and certainly could be wrong about this.

Jim   

[PaulW]

Went looking for the article.. unsuccessfully.
Found quite a few articles with far worse outcomes, and some with better.
Seemed very dependant on the medical team.

I read something the other day, and unfortunately do you think I can find that!
Facial nerve outcomes were 100% and hearing preservation and even hearing improvement were the best I have ever seen.

Basically NO attempt to remove the tumour from the IAC at all.
Decompress the nerves and blood vessels in the IAC by breaking open the IAC, and then Zap with Gammaknife.

The theory was it was the compression of the nerves and bloodvessels that caused the biggest decline in hearing, in the IAC, after radiation. But it was damage to the blood supply to the nerves, and other trauma to the nerves through surgery that caused facial problems and hearing loss.
Post Radiation swelling was a cause of deafness. So break open the IAC to allow the tumour to swell, and make no attempt to touch the IAC part of the tumour at all, and debulk the non IAC portion and zap with Gamma Knife

So combining both surgery and radiation for even small tumours may have the best results.

Now where is that article!

[Suu]

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

[mk]

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

[LizAN]

Liz,

Like yours, my AN is also located from one end to the other in my IAC, with it slightly protruding.  I am having middle fossa on July 18th at House with Friedman/Schwartz.  My AN is approximately 10.5 x 5.3 x 9.9 mm.   Even though I have some deficits in speech discrimination, I am choosing middle fossa as I still want to hear some sound...even if I can't understand what's being said.

As far as facial nerve outcome, House gives their percentages of post-op facial nerve function at www.acousticneuroma.org.  There's other good reading as well.  Look under House Clinic Perspective or read the entire site.

Lisa

Thank you, Lisa.

What are the dimensions of a typical IAC?  I only got the length of my tumor from this latest MRI report.  Given my symptoms, I'm guessing my canal is pretty much full of tumor now.  Does the canal itself start to expand when the tumor gets big enough?

I read the House Clinic Perspective, but I'm a little frustrated that they don't give all the details for each procedure, making it a bit harder to compare.  For instance, they say that the average translab procedure took 3.3 hours, but they only give the actual temporal lobe retraction time for middle fossa, which was 90 minutes.  Also there is part of a sentence missing, just above the header for Postoperative Follow-Up, where it says "When comparing the risk of facial nerve paralysis in comparable tumors ( ".  I'd really like to know what the rest of that sentence is!  They mention three deaths from translab.  Do they specialize in middle fossa at House?  Do they try to steer people toward middle fossa?

Liz

[LizAN]

Liz ~

Perhaps I'm an anomaly but I was diagnosed with a 4.5 cm AN that was 'de-bulked' to approximately 2.5 cm preceding 26 FSR treatments.  Post-op, I suffered no facial nerve problems.  Admittedly, one AN surgery patient's outcome does not prove too much but I still have to differ with the conclusion that surgery on a smaller AN routinely offers a better chance of avoiding facial nerve issues.  Then again, I'm not a doctor and certainly could be wrong about this.

Jim   

Wow, Jim, your story is quite remarkable.  What symptoms were you having at the time of diagnosis?  How much of your tumor was inside the IAC?

Thanks,
Liz

[LizAN]

Went looking for the article.. unsuccessfully.
Found quite a few articles with far worse outcomes, and some with better.
Seemed very dependant on the medical team.

I read something the other day, and unfortunately do you think I can find that!
Facial nerve outcomes were 100% and hearing preservation and even hearing improvement were the best I have ever seen.

Basically NO attempt to remove the tumour from the IAC at all.
Decompress the nerves and blood vessels in the IAC by breaking open the IAC, and then Zap with Gammaknife.

The theory was it was the compression of the nerves and bloodvessels that caused the biggest decline in hearing, in the IAC, after radiation. But it was damage to the blood supply to the nerves, and other trauma to the nerves through surgery that caused facial problems and hearing loss.
Post Radiation swelling was a cause of deafness. So break open the IAC to allow the tumour to swell, and make no attempt to touch the IAC part of the tumour at all, and debulk the non IAC portion and zap with Gamma Knife

So combining both surgery and radiation for even small tumours may have the best results.

Now where is that article!

I found a ton of articles, too.  Still trying to sort through them.  I don't think any of them was the original one.  Is Samii in Europe?  I vaguely recall that was the surgeon whose statistics were quoted, but I could be wrong.


That's very interesting about breaking open the IAC and then doing GK.  Don't they have to seal it back up, in order to prevent a CNS leak?

Liz