Author Topic: mom of 23 yr old recently diagnosed AN  (Read 18008 times)

Kate B

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Re: mom of 23 yr old recently diagnosed AN
« Reply #30 on: April 04, 2008, 08:48:17 pm »
My understanding is that radiation treatment is more about facial nerve preservation especially in tumors over 2 cm.. Up until 2 cm, the facial nerve preservation is statistically good in surgery patients. If my tumor had been between 2 cm and 3 cm, I would have taken the radiation path.

 Hearing decline in radiation treatment sometimes is delayed for 2 years or more.

Here is info from the UPMC site.
Hearing preservation has three defined states:
maintenance of hearing within the same hearing class,
preservation of hearing at a "useful" or "serviceable" level (Gardner-Robertson score of 1 or 2), and
maintenance of some measureable hearing function.
 
"Over time, there was some drop-off in hearing preservation in patients who were 10 or more years after radiosurgery. Serviceable or useful hearing (Class 1-2) was preserved in 60 of 106 evaluable patients with a 10-year actuarial preservation rate of 53.8 + 6.8%. Drop from Gardner Robertson grade 1 to grade 2 levels of hearing were seen in two patients beyond this timeframe (at 116 and 128 months after radiosurgery). Hearing improved by one class, 4 to 24 months post-radiosurgery in 5 patients. In one of these patients, hearing was eventually lost on later follow up. One patient improved in hearing from GR class 3 to GR class 1 at 19 months. Two patients who maintained class 1 serviceable hearing noted a subjective improvement in speech discrimination after radiosurgery. Preservation of any testable hearing by pure tone audiometry was accomplished in 174 of 184 patients with a 10-year actuarial preservation-rate for any testable hearing of 80.4 + 6.8%."

« Last Edit: April 04, 2008, 09:00:50 pm by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Kate B

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Re: mom of 23 yr old recently diagnosed AN
« Reply #31 on: April 04, 2008, 08:55:25 pm »
Report from visit with Dr. Brackman:

Dr. Brackman was patient with his explanations,David's AN is 4mm, and Dr. Brackman said that there were no additional measurements since it is round like a pea.  It does not extend out to his auditory canal.

Dr. Brackman said that the recovery would take about 3 weeks.

Seems like we have really descended into a quagmire of conflicting opinions from very reputable people on all sides of the issue.  It's enough to get a headache without even having the treatments.

Katherine


Hi Katherine,
Yes, I understand the confusion.  See the piece that makes your son's case especially confusing is that he has all of the available treatment options open to him.  I ,too, had all open to me at 1.5 cm.  After awhile, I honed in on what was important to me. 
It is captured in a Guide to the decision making process.  Take a look at it and maybe it will help.

http://anausa.org/forum/index.php?topic=5786.0

Dr. Brackmann is excellent at treating acoustic patients. The more hearing a person has prior to surgery the better they are at keeping some after(with middle fossa surgery). I had 100% going into middle fossa surgery and after I had 80% high frequencies and 50% low frequencies.

I was back at work full-time after 5 weeks.  As you can see, there are no "always" or "nevers" for all cases in any treatment--only individual reports. That is why I believe in peer reviewed data.  It looks at the numbers in aggregate.  That is why I respect UPMC as they have been tracking their data and reporting on it in peer reviewed literature for over 30 years. 

BTW, I never had a headache before or after surgery. 

Kindest Regards,
Kate
« Last Edit: April 05, 2008, 06:39:56 am by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Mark

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Re: mom of 23 yr old recently diagnosed AN
« Reply #32 on: April 04, 2008, 11:04:45 pm »
I would tend to disagree with Kate's assertions on several levels.

First, Radiosurgery results are as much about hearing as they are facial nerve function
Second, I'm not sure where she is coming up with the 2 cm figure for comparable results with surgery but based on the collective studies I've seen I'd have a hard time buying the two had similar outcome probabilities until at least 1 cm and below

Facial nerve function preservation with radiosurgery consistently is 98-99% throughout the size range it effectively can treat which is roughly 3 cm or less. Keeping in mind that nerve function is the issue , not nerve preservation, surgical results clearly diminish with size. Based on what I read at about 1 cm you probably are in a 90% range in the hands of a very good surgeon, closer to the 80% range around 2 cm and reducing as you go on. At no point would I buy that surgery would deliver a 98% or better facial nerve function above a 1 cm size on a consistent basis.

In terms of hearing, it's first important to understand that the UPMC study she referenced was written in 1998 on patients that were treated with single shot GK at higher dose rates than is conventionally used today and before machines and protocols using fractionated treatments were introduced. More recent studies would suggest that across all sizes single dose GK will maintain usable hearing levels in 60-65% of the cases and fractionated CK is closer to 70-75%. Again surgery is very size dependent and I can personally attest to a 2 cm having about a 10-15% chance of retaining a usable hearing and from my notes with doctors a 1.5 cm is maybe 40-50% and a 1 cm closer to the 70-75% range.

It is also worth noting that the size jump between a 1 cm and 2 cm is not double, but essentially triple of more given it is a cubic or 3 dimensional measurement

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

leapyrtwins

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Re: mom of 23 yr old recently diagnosed AN
« Reply #33 on: April 04, 2008, 11:52:29 pm »
The more hearing a person has prior to surgery the better they are at keeping some after.

This doesn't sound right.  As we say time and time again on this forum, everyone is different and while I'd like to agree that if you want to keep some of your hearing you should choose surgery, I think that would be misleading.   

In the case of retrosigmoid, there is a chance of saving a patient's hearing, but from what I understand, it's not a huge chance, it's a slight chance.  And in the case of translab, the surgical approach automatically means that a patient will have no hearing in their AN ear.

I think a lot has to do with the location of the AN and the "circumstances" that the doctor comes across during the surgery.  Although my hearing was diminished prior to my surgery, it was actually quite good and my word recognition was almost normal.  I choose retrosigmoid in the hopes of saving the hearing I had, but I knew that I could lose it.  Because my AN was wrapped around my hearing nerve, I ended up with SSD.

I can't cite any studies, but IMO based on what I've read on this forum, there are plenty of patients who chose surgery and ended up with SSD.




« Last Edit: April 04, 2008, 11:57:20 pm by leapyrtwins »
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Blanche

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Re: mom of 23 yr old recently diagnosed AN
« Reply #34 on: April 05, 2008, 06:18:18 am »
Hi,

Thought i would throw my pennies worth in!!!

Firstly, sorry to hear of your sons diagnonsis - but just to let u know i was 34 when i was diagnosed with 12mm left side AN in Nov 2006. I had no headaches or hearing loss was just diagnosed as had fullness feeling in ear and 3 months of tinitus. They told me there was no rush to decide what i wanted to do (i could just watch and wait) but on seeing 3 surgeons they all advised differently watch & wait, gamma Knife and surgery.

I got told that with gamma knife at my age there was some evidence of possible malignacy long term albeit very very small - just like what they told your son. The also said with gamma knife there is a 1in 10 chance of re-growth and then surgery is more difficult.

In the end i went for surgey 6 months after disgnosis (7th may 2007) as personaly i just wanted closure and even though i knew it was irational the malignancy thing played on my mind. I made sure i picked the surgeon who gave me the best odds of preserving my facial nerve (he said 100%) but he did say i would probly lose my hearing even though i had perfect hearing pre-op. I think it all depend on where and how the AN is sitting.

As a result of the surgery i did lose my hearing but my facial nerve was untouched. I was in hospital 2 weeks and all went  really really well. i was back driving and holidaying after 3 months and 11 months on i can honestly say i am completely back to normal and feel great - no headaches or balance issues or anything!!!!

Just thoght it might be nice to hear a tale of smooth surgery and life post op back to normal.

Wishing you and your son well.

12mm left side AN - diagnosed 10/11/06, had surgery 7/5/07 at INI Hospital Hannover, Germany, Prof. Samii. Initial symptoms were tinnitus & fullness in ear. Post surgery have lost hearing in left ear but still have tinitus! More importantly had NO facial Palsy and now feeling great and fighting fit!

Kate B

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Re: mom of 23 yr old recently diagnosed AN
« Reply #35 on: April 05, 2008, 06:36:06 am »
The more hearing a person has prior to surgery the better they are at keeping some after.

This doesn't sound right. 

Jan,
Although  as you suggest, it doesn't sound right, it is posted this way on the House website.  Also those comments were made specifically referencing middle fossa surgery not retrosigmoid nor translab.
"One of the major recent focuses of acoustic neuroma surgery is the preservation of hearing. The size of the acoustic neuroma and how well the patient hears prior to surgery are influential factors in the success of hearing preservation."
http://www.houseearclinic.com/acousticneuroma.htm

Also,although I have heard that retrosigmoid is a hearing preservation option, I'd be curious to know if anyone with retrosigmoid kept their hearing?  While doing my fact-finding, I did not run into anybody.  Just curious.

Kate
« Last Edit: April 05, 2008, 06:41:45 am by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Kate B

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Re: mom of 23 yr old recently diagnosed AN
« Reply #36 on: April 05, 2008, 06:45:54 am »
I would tend to disagree with Kate's assertions on several levels.

First, Radiosurgery results are as much about hearing as they are facial nerve function
Second, I'm not sure where she is coming up with the 2 cm figure for comparable results with surgery but based on the collective studies I've seen I'd have a hard time buying the two had similar outcome probabilities until at least 1 cm and below

Facial nerve function preservation with radiosurgery consistently is 98-99% throughout the size range it effectively can treat which is roughly 3 cm or less. Keeping in mind that nerve function is the issue , not nerve preservation, surgical results clearly diminish with size. Based on what I read at about 1 cm you probably are in a 90% range in the hands of a very good surgeon, closer to the 80% range around 2 cm and reducing as you go on. At no point would I buy that surgery would deliver a 98% or better facial nerve function above a 1 cm size on a consistent basis.

In terms of hearing, it's first important to understand that the UPMC study she referenced was written in 1998 on patients that were treated with single shot GK at higher dose rates than is conventionally used today and before machines and protocols using fractionated treatments were introduced. More recent studies would suggest that across all sizes single dose GK will maintain usable hearing levels in 60-65% of the cases and fractionated CK is closer to 70-75%. Again surgery is very size dependent and I can personally attest to a 2 cm having about a 10-15% chance of retaining a usable hearing and from my notes with doctors a 1.5 cm is maybe 40-50% and a 1 cm closer to the 70-75% range.

It is also worth noting that the size jump between a 1 cm and 2 cm is not double, but essentially triple of more given it is a cubic or 3 dimensional measurement

Mark

Mark,

What type of surgery did you have?

My statistics come from various readings including House Ear.   I found in my reading, that when the tumor was under 2 cm, facial preservation was consistent between surgery and radiation.

"Results of surgical procedures for treatment of acoustic neuroma at the House Ear Clinic with respect to facial nerve preservation are greater than ninety-eight percent (98%)."


In my reading, I found hearing preservation wasn't the main reason person's chose radiosurgery.  The UPMC article is from their website and one that they keep posted on their site to this day. Actually even though 1998 sounds outdated, that is approximately the time Cyberknife began. Cyberknife has a recent (and it appears in this decade--a successful) history.


If you would be so kind to share your statistics, I'd appreciate it.

Kate

« Last Edit: April 05, 2008, 09:11:10 am by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

leapyrtwins

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Re: mom of 23 yr old recently diagnosed AN
« Reply #37 on: April 05, 2008, 09:48:39 am »
Although  as you suggest, it doesn't sound right, it is posted this way on the House website.  Also those comments were made specifically referencing middle fossa surgery not retrosigmoid nor translab.
"One of the major recent focuses of acoustic neuroma surgery is the preservation of hearing. The size of the acoustic neuroma and how well the patient hears prior to surgery are influential factors in the success of hearing preservation."
http://www.houseearclinic.com/acousticneuroma.htm

Kate

Ah, the reference was to middle fossa surgery.  Now it makes more sense.   Thanks for the clarification.

It's also helpful to read the direct quote from the House website which reinforces what some of us said about AN size.

From reading your prior comment, I got the impression that surgery pretty much meant hearing preservation was a given - and that is not true.

Jan

« Last Edit: April 05, 2008, 02:49:36 pm by leapyrtwins »
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Mark

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Re: mom of 23 yr old recently diagnosed AN
« Reply #38 on: April 05, 2008, 11:44:13 am »
Kate,

In response to a couple of your questions

What type of surgery did you have?

Researched both extensively like most folks , opted for CK. I thought that was noted on my profile whenever I post, I'll have to check

My statistics come from various readings including House Ear.   I found in my reading, that when the tumor was under 2 cm, facial preservation was consistent between surgery and radiation.

"Results of surgical procedures for treatment of acoustic neuroma at the House Ear Clinic with respect to facial nerve preservation are greater than ninety-eight percent (98%)."


I know from reading many of your posts that you do reference HEI as a source many times. While in no way diminishing their surgical expertise and acknowledging that they will tend to have better outcomes than most others, I personally do not feel comfortable with much of their information as credible for the following reasons:

1) While not a subscriber to medical journals, I can't remember the last time I found a clinical study by HEI in one when I did a google search. That process requires peer review and challenge before publication which at least validates the study methodolgy by outsiders. Anything else is self reporting which either may be legitimate or propaganda.
2) their web site comments relative to radiosurgery historically have been inaccurate when compared to the vast majority of published studies. In my view, they either haven't taken the time to stay current on that topic or are reflecting a bias and that tend to taint my view of their claims in other areas. just my opinion there

We can agree to disagree on HEI's credibility for a balanced view of both treatment options, but I look at information self reported by them as questionable.

In my reading, I found hearing preservation wasn't the main reason person's chose radiosurgery.  The UPMC article is from their website and one that they keep posted on their site to this day. Actually even though 1998 sounds outdated, that is approximately the time Cyberknife began. Cyberknife has a recent (and it appears in this decade--a successful) history.

Clearly, there are many valid and very personal reasons each individual chooses an option. On the emotional side there is "I just want it out", fear of surgery, fear of radiation etc. On the outcome probability side there is the analyzing and interpreting of all the various studies one can find. Sorting through the various issues relating date, methodology and bias is a challenge for everyone. Given that facial nerve preservation is a higher priority than  hearing and that hearing is to some degree compromised to some extent for all of us before treatment, I would agree that hearing is not the main reason for choosing either option.

In the context of your post, the issue you raised was the differential in result probabilities as the size of the AN increased which generally favors radiosurgery which I agree with. My counterpoint was only to the point of where the "delta" between the 2 options begins. You suggested it is the roughly the same until after 2 cm , I would suggest it's closer to 1 cm for both hearing and facial function. the caveat I would stipulate to on the facial side is if you distinguish between surgical approaches. A study I just found this morning does indicate that the translab approach can have a high 90 plus % result up to 2 cm, but not the middle fossa. If the 98% you quoted from HEI is specific to TL then another study would seem to validate that. However, the way your post read there was no indication that they were not making an assertion regardless of route.

OK, here are a couple of studies I would offer to the discussion

While I wish more studies would isolate data by AN size, only a few seem to do that. Here is one from UCSF dated 2001 which I based most of my comments on

http://www.ucsf.edu/nreview/06.4-Oncology-HistologicalType/AcousticNeuroma.html

The relevant table is this

Cranial Nerve Preservation Following Surgery
Tumor Size   VIIth Nerve   VIIIth Nerve
< 1 cm             95-100%         57%
1-2 cm              80-90%          33%
>2 cm             50-75%          6%

A 2002 study by Robert Jackler , et all comparing middle fossa to translab. Dr. Jackler is probably one of the most published clinicians on AN's in the world. I still have the 2 inch thick stack of his articles he gave me at my consult  :). This supports the claim of comparable results at 1 cm or below to what is observed for most radiosurgery studies, but also shows declining outcomes for middle fossa between 1-2 cm, but equivalent facial for translab to that size. Of course hearing is a non issue forTL at any size.

http://med.stanford.edu/profiles/frdActionServlet?choiceId=showPublication&pubid=40759&fid=3947

the abstract is

Risk-benefit analysis of using the middle fossa approach for acoustic neuromas with >10 mm cerebellopontine angle component.

Satar B, Jackler RK, Oghalai J, Pitts LH, Yates PD

OBJECTIVES: To evaluate hearing preservation and facial nerve (FN) outcome in the middle fossa (MF) approach for acoustic neuromas with a cerebellopontine angle (CPA) component >10 mm. STUDY DESIGN: Retrospective review of 193 patients. PATIENT POPULATION: Patients were grouped according to tumor size: intracanalicular tumors (IC; 64), 1 to 9 mm CPA extension (42), and 10 to 18 mm CPA extension (47). Additionally, a group of 40 patients (tumor size 10-18 mm CPA extension) who had undergone a translabyrinthine (TL) approach was studied to assess comparative FN outcome. Hearing and FN function were measured 1 year postoperatively. We defined the success at functional hearing preservation as AAO-HNS class B or better and good FN outcome as House-Brackmann grade II or better. RESULTS: For IC tumors and those with up to 9-mm CPA extension, there was no significant difference in the rate of functional hearing preservation (62.2% vs. 63.1%, P =.931) and good FN outcome (93.7% vs. 97.6%, P =.358). For tumors of 10- to 18-mm CPA extension, the rate of hearing preservation (34%) was lower than the other groups (P =.006 and P =.009). In this group, the rate of good FN outcome was lower compared with the IC and 1- to 9-mm tumors (80.8% vs. 93.7%, P =.037 and 97.6%, P =.012). The rate of good FN outcome following the TL approach in a comparable cohort of patients was 100% (P =.003 in comparison with 10-18 mm tumor resected with the MF approach). CONCLUSIONS: When considering surgical options, patients with >10-mm tumors should be advised that choosing the MF approach for hearing preservation carries a somewhat higher risk of persistent FN dysfunction.



Study by Steve Chang et al on CK results as of 2005. I understand there is an updated report due out in a couple of months with a larger study sample size and obviously follow up period

http://med.stanford.edu/profiles/frdActionServlet?choiceId=showPublication&pubid=66900&fid=4735

the abstract is as follows and suggests better hearing and facial nerve outcomes than the 1998 study and includes all AN sizes

Neurosurgery  2005; 56 (6): 1254-61; discussion 1261-3
Staged stereotactic irradiation for acoustic neuroma.

Chang SD, Gibbs IC, Sakamoto GT, Lee E, Oyelese A, Adler JR

OBJECTIVE: Stereotactic radiosurgery has proven effective in the treatment of acoustic neuromas. Prior reports using single-stage radiosurgery consistently have shown excellent tumor control, but only up to a 50 to 73% likelihood of maintaining hearing at pretreatment levels. Staged, frame-based radiosurgery using 12-hour interfraction intervals previously has been shown by our group to achieve excellent tumor control while increasing the rate of hearing preservation at 2 years to 77%. The arrival of CyberKnife (Accuray, Inc., Sunnyvale, CA) image-guided radiosurgery now makes it more practical to treat acoustic neuroma with a staged approach. We hypothesize that such factors may further minimize injury of adjacent cranial nerves. In this retrospective study, we report our experience with staged radiosurgery for managing acoustic neuromas. METHODS: Since 1999, the CyberKnife has been used to treat more than 270 patients with acoustic neuroma at Stanford University. Sixty-one of these patients have now been followed up for a minimum of 36 months and form the basis for the present clinical investigation. Among the treated patients, the mean transverse tumor diameter was 18.5 mm, whereas the total marginal dose was either 18 or 21 Gy using three 6- or 7-Gy fractions. Audiograms and magnetic resonance imaging were obtained at 6-months intervals after treatment for the first 2 years and then annually thereafter. RESULTS: Of the 61 patients with a minimum of 36 months of follow-up (mean, 48 mo), 74% of patients with serviceable hearing (Gardner-Robinson Class 1-2) maintained serviceable hearing at the last follow-up, and no patient with at least some hearing before treatment lost all hearing on the treated side. Only one treated tumor (2%) progressed after radiosurgery; 29 (48%) of 61 decreased in size and 31 (50%) of the 61 tumors were stable. In no patients did new trigeminal dysfunction develop, nor did any patient experience permanent injury to their facial nerve; two patients experienced transient facial twitching that resolved in 3 to 5 months. CONCLUSION: Although still preliminary, these results indicate that improved tumor dose homogeneity and a staged treatment regimen may improve hearing preservation in acoustic neuroma patients undergoing stereotactic radiosurgery.


These would be what I would base my previous thoughts on

Best,

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

km5

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Re: mom of 23 yr old recently diagnosed AN
« Reply #39 on: April 05, 2008, 09:47:18 pm »
Hello everyone

This is Kathy, the 23-yr-old's mom again.  I am gratified that our journey has created some really provocative discussions on these boards.  Our son-in-law, currently doing a postdoctorate in neuroscience, did his review of all the scientific literature, and his conclusion is strongly in favor of radiosurgery for his brother-in-law, our David.  We have made an appointment to see Dr. Chang, at Stanford, in early May for consultation.

We have sent along some of the articles etc to our son, David, and we talk about the choices every few days.  I see him wavering back and forth, with some of the bravado of a young man i.e. "I have full confidence that I am very healthy and strong.  I will work out a lot in the next few weeks.  I will recover from the surgery with no problem, and I am happy to get the tumor out."  Also, " I have a life expectency of 65 more years.  I am not satisfied to hear that radiation only has a history of 30 plus years."

Ultimately, the decision is David's.  He is an adult, and we can't push him one way or another.  I am hopeful that Dr. Chang will be just as convincing as Dr. Brackman.  David is going on a young adult trip to Israel in May, right after he graduates college, and he thinks that perhaps the "spirituality" of the trip will make his decision more clear.  Luckily his 4 mm AN gives him some breathing room.  So I will let all of you know next month about the consultation with Dr. Chang.

Thank you all again so much for caring. 
A new question:  Dr. Brackman was quite clear that in order to remove the AN it is necessary to sever the balance nerve; the opposite ear then takes a few days to correct the balance issue.  Why would anyone go thru this procedure that severs a nerve, albeit not the facial nerve, forever, if another less-invasive alternative i.e. radiation, with similar results, is also available?   

sgerrard

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Re: mom of 23 yr old recently diagnosed AN
« Reply #40 on: April 05, 2008, 10:01:53 pm »

" I will recover from the surgery with no problem, and I am happy to get the tumor out."  Also, " I have a life expectancy of 65 more years.  I am not satisfied to hear that radiation only has a history of 30 plus years."

Dr. Brackman was quite clear that in order to remove the AN it is necessary to sever the balance nerve; the opposite ear then takes a few days to correct the balance issue.  Why would anyone go thru this procedure that severs a nerve, albeit not the facial nerve, forever, if another less-invasive alternative i.e. radiation, with similar results, is also available?   


I think it is more like a few weeks, not just days, to adjust to the change in balance nerves. The quote from David pretty much answers your question about why would people do that. Dr. Medbery on the CK forum asks himself the same question. Some people like the idea of surgery better than the idea of radiation; all I can say in reply is "to each his own." In the end, though, it is important that the patient believes in the treatment they are getting. If it turns out that David prefers the surgery, it pretty much has to go that way. At 4mm, I do hope he at least takes that trip to Israel first, and walks in his graduation.

Let's see how he reacts to Dr. Chang first. Dr. Chang can be pretty reassuring and convincing when he wants to be.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

leapyrtwins

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Re: mom of 23 yr old recently diagnosed AN
« Reply #41 on: April 05, 2008, 11:53:00 pm »
Kathy -

I think the consultation with Dr. Chang is a good idea.  It certainly can't hurt to explore all your son's options. 

As far as your question about severing the balance nerve, in my experience, the balance issue does correct itself.  Generally the first couple of days are the worst and then the body starts to compensate and in a few weeks time things are pretty much back to normal.

I had my surgery about 10 months ago and I still notice slight balance problems on occasion - usually only when I'm tired or have walked a long distance.  But, I want to stress that they are only slight; I have no major balance issues.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Kate B

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Re: mom of 23 yr old recently diagnosed AN
« Reply #42 on: April 06, 2008, 06:31:26 am »
" I have a life expectency of 65 more years.  I am not satisfied to hear that radiation only has a history of 30 plus years."

Ultimately, the decision is David's.  He is an adult, and we can't push him one way or another.  I am hopeful that Dr. Chang will be just as convincing as Dr. Brackman. 

A new question:  Dr. Brackman was quite clear that in order to remove the AN it is necessary to sever the balance nerve; the opposite ear then takes a few days to correct the balance issue.  Why would anyone go thru this procedure that severs a nerve, albeit not the facial nerve, forever, if another less-invasive alternative i.e. radiation, with similar results, is also available?   


Hi Kathy,

There is no one right way to treat an acoustic neuroma and that is the confusion and conflict in the decision making process.  Oftentimes it then becomes the persuasiveness of the doctor relative to the information provided. As we have learned from all of our collective experience each doctor has their own belief in the current system they are doing...even if both are in the conversation. 

I think you've hit the nail right on the head with the argument for the various procedures. One of them is the long term data relative to radiation.  Thirty years is a fair amount of time for follow up; but it is 30 years. In that time, they learned to reduce the "gy" in order to minimize the side effects.  So even though it is 30 years of data, it is less when you are discussing apples to apples.  With Cyberknife, that procedure started about 10 years ago..In 2001, it was considered a new procedure.  I look forward to peer reviewed published studies from Stanford once they have a detailed patient group and follow up.  I suspect the data will be positive and line up with the gamma knife data and once published will most likely include our own membership:-) (albeit unnamed in study results)

The other side compensates for the balance nerve.

I agree with the others, that at 4mm he has time to focus on graduation and his planned trip prior to making a decision.

To help people consider what is important to them, there is a guide to the decision making process that David or yourself may find useful. It helps you identify what are the non-negotiables for you. 
http://anausa.org/forum/index.php?topic=5786.0
All the best,
Kate
« Last Edit: April 06, 2008, 07:15:35 am by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Kate B

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Re: mom of 23 yr old recently diagnosed AN
« Reply #43 on: April 06, 2008, 06:48:19 am »

[i]Neurosurgery  2005; 56 (6): 1254-61; discussion 1261-3
Staged stereotactic irradiation for acoustic neuroma.

Chang SD, Gibbs IC, Sakamoto GT, Lee E, Oyelese A, Adler JR

OBJECTIVE: Stereotactic radiosurgery has proven effective in the treatment of acoustic neuromas. Prior reports using single-stage radiosurgery consistently have shown excellent tumor control, but only up to a 50 to 73% likelihood of maintaining hearing at pretreatment levels. Staged, frame-based radiosurgery using 12-hour interfraction intervals previously has been shown by our group to achieve excellent tumor control while increasing the rate of hearing preservation at 2 years to 77%. The arrival of CyberKnife (Accuray, Inc., Sunnyvale, CA) image-guided radiosurgery now makes it more practical to treat acoustic neuroma with a staged approach. We hypothesize that such factors may further minimize injury of adjacent cranial nerves. In this retrospective study, we report our experience with staged radiosurgery for managing acoustic neuromas. METHODS: Since 1999, the CyberKnife has been used to treat more than 270 patients with acoustic neuroma at Stanford University. Sixty-one of these patients have now been followed up for a minimum of 36 months and form the basis for the present clinical investigation. Among the treated patients, the mean transverse tumor diameter was 18.5 mm, whereas the total marginal dose was either 18 or 21 Gy using three 6- or 7-Gy fractions. Audiograms and magnetic resonance imaging were obtained at 6-months intervals after treatment for the first 2 years and then annually thereafter. RESULTS: Of the 61 patients with a minimum of 36 months of follow-up (mean, 48 mo), 74% of patients with serviceable hearing (Gardner-Robinson Class 1-2) maintained serviceable hearing at the last follow-up, and no patient with at least some hearing before treatment lost all hearing on the treated side. Only one treated tumor (2%) progressed after radiosurgery; 29 (48%) of 61 decreased in size and 31 (50%) of the 61 tumors were stable. In no patients did new trigeminal dysfunction develop, nor did any patient experience permanent injury to their facial nerve; two patients experienced transient facial twitching that resolved in 3 to 5 months. CONCLUSION: Although still preliminary, these results indicate that improved tumor dose homogeneity and a staged treatment regimen may improve hearing preservation in acoustic neuroma patients undergoing stereotactic radiosurgery.[/i]

These would be what I would base my previous thoughts on

Best,

Mark

Mark,

You are one of a select group in that as of 2005, 270 patients were treated.  I look forward to continued publication of data from Stanford in the future.  Words used in his article suggest that this follow up is preliminary and that this article represents 61 of the 270 patients.  61 is a good starting number and as those numbers grow there will be more long term data.

Again, I think radiation is a viable option. For me, it would have been between the 2cm and 3 cm mark (and depending on the location)  I felt comfortable selecting surgery with a 1.5 cm tumor. I am thankful that we as patients have the options to make choices that best reflect our preference.

As you may already know, publishing data even in pub med does not mean it underwent peer review.  I contacted the librarian several years ago and this was her response:

"Not all journals selected for Index Medicus are peer-reviewed , nor do we designate which journals are reviewed.  You can look up a journal title in Ulrich's International Periodicals Directory published by RR Bowker
and if it has the designation "refereed" the journal is peer-reviewed.�
C. Williard e-mail
Reference librarian at the Nat’l Llib of Med



Kate
« Last Edit: April 06, 2008, 07:17:48 am by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Kate B

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Re: mom of 23 yr old recently diagnosed AN
« Reply #44 on: April 06, 2008, 07:02:11 am »
16 - Your right that a sample of 20 patients is not a viable sample.

The "funny" thing is, it is not a sample. That is the entire extent of AN related cancer in all of recorded human history worldwide. 14 cases, 8 of them NF2. Not exactly a common thing.

Steve

My question is about the number size of the sample.
What is a viable sample?  I just read an article Mark posted by Dr. Chang.  His entire cohort group is 61 patients.  When does a number become viable?

This question is not in reference to this particular study...just the viability of a sample size. 


Just curious,
Kate

« Last Edit: April 06, 2008, 07:19:55 am by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/