Author Topic: Pre-treatment? READ THIS!!  (Read 3868 times)

Captain Deb

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Pre-treatment? READ THIS!!
« on: March 26, 2006, 10:06:32 am »
I am referring to the S.A. Rutherford and A. T. King article: "What is the Best Option"  published in the British Jounal of Neurosurgery, August 2005 article posted by arcteryx. Click on the link in the post . You need to download it to acrobat reader and print it out.  I have been second guessing my decision to have surgery for my 1.2+ AN as opposed to radiation for almost three years.  After reading this article, I really think I made the right decision based on my priority--which was saving my facial nerve over anything else.

The article IMO stresses that it's not a matter of "surgery over radiosurgery or radio therapy" but stresses that the outcome is more based on the skill and experience of the surgeon over radiosurgery or radiotherapy.  My choice to have Dr. Hitselburger of House Ear Clinic, who has peel over 3000 ANs off facial nerves, do my surgery was the right one.  He is referenced at least 4 times in the footnotes  (87 of them) of this extensive article.

My interpretation of this article is that not all surgeons are alike and that there is a learning curve for AN surgery that can affect the outcome. Also referenced are clinics that are deemed "international centers of excellence" at resecting these tumors.

Surgery ain't for sissies, and I've never been much of a sissie!  My interpretaion of this article gave me the notion that radiosurgery or radiotherapy gave me a greater risk for facial weakness or nerve damage than surgery by a doc at a center of excellence, and "Dr. Hits"
in particular.  The surgeons at House work in pairs and one, monitoring the facial nerve exclusively.  My surgery took 2 1/2 hours and according to Dr. Friedman, Dr. Hits's surgical partner, was "textbook." I was given a 60% chance of saving the residual hearing, which was pretty poor to begin with, but unfortunately That didn't happen, probably due to poor blood supply to the hearing nerve, which was left intact.

I also had pretty severe headaches for 3 years, which have subsided.  I had hereditary migraines to begin with which were exacerbated by the trauma of surgery.
Today, I'm doing eally well except for an occaisional migraine.  I ran 3 miles on the treadmill at the gym in under 36 minutes, and I'm back at work.  I'm a little slower than I used to be at everything, and I'm a little wobbly in the dark and when I get off the treadmill the room spins for a few mintues, but my smile is intact as are is my eye function.

We all need to make decisions based upon our priorities. If you are pre-treatment, not matter what size you AN is, I urge you to download and read this article thoroughly. It seems to be the most current one out there.

Capt Deb 8)

"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Mark

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Re: Pre-treatment? READ THIS!!
« Reply #1 on: March 27, 2006, 12:59:39 am »
Capt Deb,

I also downloaded and read the Rutherford -King article and would agree with most of your post , but wouldn't draw the same conclusions as you on the facial nerve issue. It is an excellent study and well worth everybody's time to read who is exploring their options.

I would absolutlely agree that in the surgical option the best results tend to be limited to those who have done a tremendous amount of procedures, such as HEI. The large variabilty in surgical results is directly tied to the experience of the doctor involved. Radiosurgery on the other hand offers a more consistent outcome regradless of the expereince level

From Page 314

" A more pragmatic approach would be to recognize that most surgical units can not aspire to these figures, whilst radiosurgeons are able to reproduce their figures across different units with ever increasing consistency. Patients have been voting with their feet and having been given the option, radiosurgical practice for vestibular schwannomas has taken off in the last decade"

In the next paragraph

" this may, however, mean that to continue to advocate surgery, one will have to offer patients surgical results comparable to the best published series"

This would clearly indicate, to your point , that unless you go to someone such as HEI or a doctor of similar training and experience , surgery is a much riskier proposition than radiosurgery. No argument there.

I'm not sure I follow the "surgery was a better choice  for facial nerve preservation" statement.

Referring to surgery on page 311

" The large series with the best reported  facial nerve function consistently quote greater than 95% of patients with small tumours retaining Grade 1 or 2 function. However it is well regarded  that such figures are not reproducible in larger tumors or in the early part of a surgeon's learning curve

Again this reinforces to get the most experienced surgeon for the best facial nerve results but that even with the best the odds go down as the AN size goes up.

In addressing radiosurgery preservation further down it references the "early days " of radiosurgery as having facial weakness between 8-32 % of the time which is what I suspect you picked up on. However, at the end of that paragraph after addressing the refining of doses and improved software it says

" More recent publications show rates of permanent facial injury under 5% and even as low as 1-2%. The fact that these results are now being consistently reproduced is a powerful argument for this technique"

That sounds like the authors are making a case that radiosurgery has less risk to the facial nerve than surgery which is consistent with all the studies I've seen

In terms of tumor control

on page 310 referring to surgery regrowth the authors write

"one series  that has assessed long term tumor recurrence rates reported a 9% regrowth rate 11.5 years after initial gross total resection. A further report published in 1996 ...... stated that 8% of patients had evidence of tumor on postoperative imaging"

Further on that page in discussing radiosurgery

"Several large series quote the precentage of tumors that shrink or remain static to be 85-94%. The primary clinical endpoint is remaining free from surgery and this percentage is usually higher, between 92-98%. The most recent publications with the longest follow up data continue to support these figures in tumor control"

In regards to Quality of life on page 313

" Comparative studies have more recently been produced , looking at surgery, radiosurgery and conservative management. These have confirmed that the greatest negative impact on quality of life is from surgery"

So, I would agree that if one chooses surgery in the hands of a talented , experienced AN surgeon such as House, they can provide those with smaller AN's better outcomes for Tumor control,and hearing -facial nerve preservation. However, to suggest that was a better option than radiosurgery to achieve the facial nerve priority in general would not be accurate from my reading of the article.

I would never want to disagree with my cruise captain, but in this case, I have to take exception to a statement that "radiosurgery gave me a greater risk of facial weakness, even in HEI. The article and the percentages in other studies don't say that

Oh boy, now I'll have to walk the plank or be keel hauled  ;D

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

ppearl214

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Re: Pre-treatment? READ THIS!!
« Reply #2 on: March 27, 2006, 06:31:57 am »
great topic of conversation... Capt'n Deb, for me, regardless of what form of treatment is choosen, it's knowing in your gut you did what was right for you.. as I've come to terms with the treatment plan I have chosen for me.  As those here have shared with me over the past 2 mos of my decision process... it's go with your gut and be at peace with what you have chosen. I commend you for achieving that within yourself and am sorry you did question after the fact. 

Mark, no plank walking for you, if I can help it! :)  Your research (as always) is so appreciated and you do bring to light thoughts to ponder as well.  You got a bottle of Yellow Tail Merlot coming your way for all the research you take the time to do and share with us. :)



My hope is that whatever choices of treatment any of us choose is the best for our situations, our locations, the uniqueness of each AN and have to believe that regardless of which we choose (if choices are available) that we are at peace with it.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Captain Deb

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Re: Pre-treatment? READ THIS!!
« Reply #3 on: March 27, 2006, 11:05:29 am »
Quote from: Mark link=topic=1087.msg9519#msg9519 date=1143442779

on page 310 referring to surgery regrowth the authors write

[b
"one series  that has assessed long term tumor recurrence rates reported a 9% regrowth rate 11.5 years after initial gross total resection. A further report published in 1996 ...... stated that 8% of patients had evidence of tumor on postoperative imaging"[/b]


Mark,
That report was published ten years ago from data how long ago?  Data coming from where and how long ago? Across the board studies not just international centers of excellence? In the past ten years not only has radiosurgery come a long way, but so has microsurgery. It was a personal choice I made based on a lot of personal research and I went with my "gut feeling." I have also lost 2 close family members in the past 10 years to malignant brain tumors, which may have influenced my decision.  I'm tired of second-guessing myself.

No you will not be keel-hauled, but you may have to walk a special plank into the vat of chocolate! ;D

Capt Deb 8)







"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Mark

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Re: Pre-treatment? READ THIS!!
« Reply #4 on: March 27, 2006, 11:28:45 am »
Hi Capt Deb,

Thanks for the reprieve on the Keel hauling, nasty business that can be  :o

Rather than walk the plank into the vat of chocolate , I think I'll have to learn more about this sex diet stuff  ::)

I would certainly agree that both treatment options have made great advances to benefit of all new patients and I think the review by the two authors in this study validates that. I also would never ever second guess anyone's choice as it is for each individual based on their situation. As many others have said, neither option has guaranteed outcomes or 0 risks, so in the end you roll the dice and go with what your heart says is best. Hopefully it all works out OK

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

DeniseSmith

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Re: Pre-treatment? READ THIS!!
« Reply #5 on: March 28, 2006, 03:28:33 pm »
Well, i had no choice, surgery was my only option.  I wish I had, had a choice, though. I don't think i would have opted for surgery in light of all my symptons and what i know now.

sjohn222

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Re: Pre-treatment? READ THIS!!
« Reply #6 on: April 13, 2006, 01:28:10 pm »
Hi folks.  I'm brand new to this and don't quite understand some of the basics.  I'm interested in viewing Deb's article and don't know how to "click on the link in the Post".  Can someone please help me?  Thanks.

Captain Deb

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Re: Pre-treatment? READ THIS!!
« Reply #7 on: April 13, 2006, 01:35:59 pm »
Hi folks.  I'm brand new to this and don't quite understand some of the basics.  I'm interested in viewing Deb's article and don't know how to "click on the link in the Post".  Can someone please help me?  Thanks.

Go to the thread called "Article: what is the best option" You will find an underlined link in the first post and click on it. It will lead you to a down load site and you can download it using acrobat. OR message me with your email address and I'll email you the article.
 Captain Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

FlyersFan68

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Re: Pre-treatment? READ THIS!!
« Reply #8 on: April 13, 2006, 02:13:58 pm »
Thanks For The Article...Good Reading. I'm a little surprised at the  regrowth rate for microsurgery but still really good odds. I think that maybe the larger tumors where some of the tumor is left behind to protect facial nerves contribute more into this percentage. I would love to see a regrowth study for each individual surgical approach and another one in accordance to size. Anyway, I'm glad I just had it removed and don't really second guess myself anymore either. Shortly after surgery it's emotionally difficult because you worry about every little ache, pain and sensation but it all goes away in time. Just my experience (so far.)