Author Topic: New USC Acoustic Neuroma Center in Los Angeles  (Read 12910 times)

cbazin

  • Newbie
  • *
  • Posts: 1
New USC Acoustic Neuroma Center in Los Angeles
« on: September 30, 2013, 02:42:11 pm »
My name is Christopher Bazin and I have been extremely lucky to have been introduced to Dr. Rick A. Friedman and Dr. John Niparko, both physicians at USC in Los Angeles, California.  The new center director, Dr. Friedman, is extremely passionate about AN treatment and an active member in the support community. 

I do not suffer from an acoustic neuroma, but I have a friend who did - this was long before the kind of treatments Friedman's team is capable of.  If you get a chance, check out Dr. Friedman's short and fun interview.

Visit the new Acoustic Neuroma Center: http://acousticneuroma.keckmedicine.org
Dr. Friedman interview: http://www.keckmedicine.org/rick-a-friedman-md-phd/

robinb

  • Sr. Member
  • ****
  • Posts: 268
Re: New USC Acoustic Neuroma Center in Los Angeles
« Reply #1 on: November 04, 2013, 12:15:01 pm »
I saw Dr. Friedman for a consult when he was at House and if I decided on surgery would have given him more consideration.

I was very excited to see this and checked out the web site as it gives the impression of a truly multi disciplined approach to the treatment options of AN's. However, I was disappointed when reading their overview as they are not as open to CK and GK as I would have hoped. Here's some excerpts on their views of radiation in the treatment of AN:

Quote
What are my treatment options?
 A. Do nothing.
 This option is typically reserved for patients who: ?1) Refuse any treatment?2) Have a very small tumor and are without many signs or symptoms.?3) Are elderly with many medical complications and have a small or medium sized tumor.?These patients need to understand that with time, the tumor will probably take the hearing in their affected ear. Periodic MRI scans are performed to follow the size of the tumor.
 B. Surgery
 Is the best treatment option for most patients because it is the only option that has an excellent chance of curing the lesion.
 C. Gamma Knife (Radiation Treatment)
 This treatment option is typically reserved for patients who: 1) Have residual tumor after a craniotomy.2) Are elderly.3) Have multiple medical problems making surgery too risky.4) Must have a tumor less than 3 cm. in size.
 The goals of the Gamma Knife treatment are to prevent the tumor from getting any larger, which is achievable in 85% of the patients. The tumor may shrink in size but usually does not disappear.
 The risks of Gamma Knife treatment for AN include:1) Delayed temporary or permanent facial weakness2) delayed temporary or permanent hearing loss in the affected ear.3) possible surrounding brain damage from the radiation.

When would I consider radiation as a treatment?

Radiation therapy (more than one session) or radiosurgery (single session) are useful treatment methods in appropriate circumstances. What those circumstances are is debatable and confusing at best. In general, radiation induces strand breaks in DNA, the genetic material of the cell. This theoretically leads to cell death and/or growth arrest in some fraction of the tumor. Although there are many studies described in our professional literature, each suffers from a lack of complete and long-term follow up. With that said, any patient with an acoustic neuroma can be treated with some form of radiation.

We will discuss radiation thoroughly with every patient as each member of our team has extensive experience with this approach. In general, we avoid using radiation in young patients and/or patients with tumors 2.5 centimeters or greater in size. Radiation is a good option for older patients and patients that are not medically fit for surgery. We await solid evidence of efficacy and tolerable long-term side effects before recommending it as a first line in most cases.


They do prominently display that they will review images at no charge and make recommendations, which is great since its an excellent team of docs. However, like most surgeons I found, they are really biased toward surgery in the treatment of AN's. Many of us have hoped for a truly collaborative approach, I was hoping this might be it. It may be better than others and it would be interesting to see feedback from newbies or those pre treatment that consult with them.


AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

ASG

  • Jr. Member
  • **
  • Posts: 58
Re: New USC Acoustic Neuroma Center in Los Angeles
« Reply #2 on: November 04, 2013, 02:05:22 pm »
I have to agree with Robin that some of the language used to compare the three treatment options is worrisome (at least in the section posted).

Specifically, phrasing used to describe radiation treatment seems to imply that outcomes such as facial weakness and "possible surrounding brain damage" are not uncommon, when all data to date suggests that this would be quite rare or extremely rare.  Meanwhile, the description of surgery mentions no side effects at all, as if facial weakness, hearing loss, and other complications were not possible.   

I think the website is correct that more long-term follow up data on radiation will further help prospective patients make a treatment decision, but in my opinion there is enough data on surgical and radiation outcomes now to have consistent language across treatment providers, regardless of their training background or specialty.  Maybe the leaders in AN surgery and radiation can get together and make this happen.

I do believe this is a fantastic center that will help lots of future patients dealing with an AN, and that this community is blessed to have world-class surgeons like Dr. Friedman on their side.  I still think the ANA says it best when they advise the newly diagnosed to get multiple opinions, know that not all ANs are the same, and find the treatment that is the best match for you.
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

Petrone

  • Jr. Member
  • **
  • Posts: 71
Re: New USC Acoustic Neuroma Center in Los Angeles
« Reply #3 on: November 04, 2013, 09:29:47 pm »
I also agree with Robin that this text shows a very troubling bias towards surgery.  They may be very good at surgery at House, but is it too much to ask that our physicians give us objective, unbiased information to help us make informed decisions?  I would not be surprised if House physicians read this forum, and if they do, I would encourage them to re-evaluate the compromised ethics of writing of "possible surrounding brain damage from the radiation."  I've never heard that stark description used anywhere before.  Ever. 

I hope the forum mediators don't think I've crossed any lines of forum etiquette, but I think this is really quite shocking. 

Petrone   
1.4cm diagnosed 3/2010
W&W until 1.8cm by 10/2012
GK performed 4/17/2013 at Froedtert in WI
2 years after GK - 1.6cm
3 years after GK - 1.4cm

robinb

  • Sr. Member
  • ****
  • Posts: 268
Re: New USC Acoustic Neuroma Center in Los Angeles
« Reply #4 on: November 05, 2013, 09:55:51 am »
Just to clarify, they do have a section on surgery and all of the possible complications.

I quoted only the details on radiation that I personally found troublesome, especially since they are touting themselves as an "Acoustic Neuroma Center".

As always, the key is "buyer beware". Everyone needs to do their research and choose the best course of action with the medical team best suited for each individual.
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

Helpful one

  • Newbie
  • *
  • Posts: 1
Re: New USC Acoustic Neuroma Center in Los Angeles
« Reply #5 on: November 06, 2013, 07:47:36 pm »
I also agree with Robin that this text shows a very troubling bias towards surgery.  They may be very good at surgery at House, but is it too much to ask that our physicians give us objective, unbiased information to help us make informed decisions?  I would not be surprised if House physicians read this forum, and if they do, I would encourage them to re-evaluate the compromised ethics of writing of "possible surrounding brain damage from the radiation."  I've never heard that stark description used anywhere before.  Ever. 

I hope the forum mediators don't think I've crossed any lines of forum etiquette, but I think this is really quite shocking. 

Petrone

Petrone, the one quoted is from the USC website not from the House website.   You should amend your encouragement to USC's new center.   I have cut and pasted the info from the House website below. 

In most cases, it’s definitely best to actively treat a growing tumor by surgical removal or stopping its growth with radiation treatment. But in some people, monitoring the tumor at regular intervals to be sure it isn’t growing can be an appropriate alternative. This approach, also referred to as “watchful waiting” or “observation”, is usually used only in older patients who might be poor surgical candidates or those with other medical problems that make having surgery undesirable. You must have follow-up MRI scans of the head, using contrast material, as often as every six months for the first year after diagnosis. If the tumor hasn’t grown, repeated MRI’s are done at the discretion of your doctor, perhaps as often as yearly. Any change in symptoms also calls for an MRI to check for tumor growth. Because these tumors can grow rather suddenly, great care must be taken to treat the tumor before it’s so large that complications are more likely. Remember, the smaller the tumor at time of active treatment, the better the outcome of treatment is likely to be. On the other hand, some tumors do not grow or grow only very slowly.

The House Clinic is a high volume acoustic neuroma center, with specialized physicians trained to treat this condition, and hundreds of surgeries performed each year. Surgical procedures offered to treat acoustic tumors include translabyrinthine, middle fossa, and retrosigmoid approaches.

Surgery for these tumors, as well as the pre- and postoperative care, is performed and assisted by a team. This team includes an internist, an anesthesiologist, a specially trained surgical nurse, a neurosurgeon and a neurotologist.

The choice of surgical approach depends upon the size of the tumor and amount of remaining hearing. It’s possible to save hearing in only a minority of cases; if hearing preservation is successful, the preserved hearing will not be better than the preoperative level and can be worse. The larger the tumor is, the lower the chances for hearing preservation. In some cases with poor preoperative hearing or a larger tumor, it’s better to sacrifice the hearing in order to remove the tumor. All procedures are performed with the patient under general anesthesia. The surgeons look through an operating microscope, and special equipment is used to ‘monitor’ the facial and possibly hearing nerves to prevent injury.

In recent years, stereotactic radiation therapy has been used to treat acoustic tumors.

This type of radiation therapy is different than radiation used for cancer. It’s highly focused on the tumor, with only low levels of radiation affecting most of the brain. This type of treatment has proved effective for certain patients with acoustic tumors. Tumors up to 3.0 cm (small or medium) have been treated with radiation. While patients of all ages can be treated, stereotactic radiation therapy may be best for older patients, since the long-term effectiveness (20 years or more) has yet to be determined. As with surgery, there are risks to hearing and to the facial nerve.

In small tumors, it’s sometimes possible to save the hearing while still removing the tumor. When tumors are larger, however, the hearing is usually lost in the involved ear as a result of the surgical procedure. Following the surgery in these situations, the patient hears only with the remaining good ear. Many people function quite adequately with only one hearing ear.



« Last Edit: November 06, 2013, 08:16:49 pm by Helpful one »

robinb

  • Sr. Member
  • ****
  • Posts: 268
Re: New USC Acoustic Neuroma Center in Los Angeles
« Reply #6 on: November 07, 2013, 11:36:02 am »
Helpful One is correct in that the quote was from the USC website and not House.

However, the info quoted from House also embodies the pro surgery stance from surgeons and in my opinion, disdain toward radiation:

Quote
In recent years, stereotactic radiation therapy has been used to treat acoustic tumors
.

GK has been around for over 20 years, and CK at least 10.

Quote
This type of radiation therapy is different than radiation used for cancer. It's highly focused on the tumor, with only low levels of radiation affecting most of the brain. This type of treatment has proved effective for certain patients with acoustic tumors. Tumors up to 3.0 cm (small or medium) have been treated with radiation. While patients of all ages can be treated, stereotactic radiation therapy may be best for older patients, since the long-term effectiveness (20 years or more) has yet to be determined. As with surgery, there are risks to hearing and to the facial nerve.

So I just remind those in pre treatment that whatever the specialty of the doctor consulted, the recommendation will be for what they generally perform. Again, buyer beware, do your research, talk to as many people and docs as possible to help make the treatment choice you feel is best for you personally.
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

Petrone

  • Jr. Member
  • **
  • Posts: 71
Re: New USC Acoustic Neuroma Center in Los Angeles
« Reply #7 on: November 07, 2013, 09:18:48 pm »

Helpful One,

Fair enough.  The bias toward surgery is more subtle at House than at USC, but it's still there nonetheless.  Stating that "radiation therapy may be best for older patients" is one example of this bias. Generally, people who are 65 years old would not consider themselves to be "older patients."

Petrone 
1.4cm diagnosed 3/2010
W&W until 1.8cm by 10/2012
GK performed 4/17/2013 at Froedtert in WI
2 years after GK - 1.6cm
3 years after GK - 1.4cm

robinb

  • Sr. Member
  • ****
  • Posts: 268
Re: New USC Acoustic Neuroma Center in Los Angeles
« Reply #8 on: November 08, 2013, 11:15:10 am »
Hi Christopher-

Just curious; don't you work for USC Keck as Director of Web Services?

Quote
http://www.linkedin.com/in/cbazin
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

mesafinn

  • Full Member
  • ***
  • Posts: 134
Re: New USC Acoustic Neuroma Center in Los Angeles
« Reply #9 on: November 08, 2013, 04:55:35 pm »
ANs are rare enough that people will--ideally--find the services that they need.  A "New USC AN Center" is needed for the nation.

But let the good work that could be done there speak for itself.  Don't use the ANA website as Newbie's with one post each to promote a product.  People here are scared, seeking information, looking for honest referrals and information.

Shady promotion (for lack of a better phrase) and endorsements such as this give people pause rather than encouragement at a time they need it.  Most of us here are lay people who are here because we needed education, support, guidance, mentorship.  It's disappointing when that level of trust gets penetrated by some who have a different kind of work to do and different intentions.

Again, let's hope the work of USC AN Center is outstanding.  But a little bit of shame to those trying to exploit the goodwill that tends to be found on this site each day.  Make your background and meaning transparent, and your recommendations will go much farther.  Let people choose surgery (or not) because of what they have learned rather than how they have been manipulated by perhaps well-intended (or not) "helpful ones."
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

kcarloy

  • Jr. Member
  • **
  • Posts: 77
  • Translab 12/11/13 at House
Re: New USC Acoustic Neuroma Center in Los Angeles
« Reply #10 on: November 09, 2013, 09:40:18 pm »
Hello,
I recently consulted with House and the USC regarding treatment for a small AN. I already have lost most recognizable hearing on that side. I felt like USC(Friedman) was strongly pushing me to have surgery asap, while House (Brackmann) discussed all options and encouraged me to think about it and call back with any questions. I am going to House, but if that hadn't worked out, I would  have gone to USC anyway. New centers are understandably eager for new business.

Barb909

  • New Member
  • *
  • Posts: 47
Re: New USC Acoustic Neuroma Center in Los Angeles
« Reply #11 on: November 14, 2013, 08:42:28 pm »
Thank you, mesafinn. Excellent perspective. Well said.

B.
Feb. 2010    4 x 8 x 5mm
June 2011   4.7 x 8.9 x 4.0mm
May 2012    4.5 x 9.1 x 3.9mm
Sept. 2013   5 x 10.1 x 5mm
Feb. 2015     6 x 13 x 5 mm
In IAC near cochlea
Mild hearing loss, tinnitus
W & W, thinking about treatment

movinguy

  • New Member
  • *
  • Posts: 6
Re: New USC Acoustic Neuroma Center in Los Angeles
« Reply #12 on: November 15, 2013, 11:00:27 am »
First post here -

I have retrosigmoid surgery with Drs Friedman/Giannotta scheduled for 12/9.  My AN is about 1.2 cm and I still have almost 100% hearing in the affected ear (only symptom is occasional facial tingle).  I'm 53 and in excellent health.

I saw another neurosurgeon prior to Dr. Friedman and he also discouraged radiation as an option.  My primary care physician also thinks I'm making the right decision in having the thing removed.

I left USC feeling very positive - but like a lot of people, I suppose, I'm optimistic and scared s***less at the same time.  :)

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: New USC Acoustic Neuroma Center in Los Angeles
« Reply #13 on: November 15, 2013, 12:13:03 pm »
Welcome to the ANA discussion forums and thanks for registering and posting. 

Because we're all AN patients here we can empathize with your emotions regarding your upcoming AN surgery.  There is always some risk involved in any surgery and this one is especially challenging for the surgeons.  That being acknowledged, you have two fine, experienced doctors on your case and you'll very likely do just fine, as so many other AN surgery patients have. 

Please feel free to use this website and the forums as a resource for information and support as The Big Day approaches.  We're here for you.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Little_Bear

  • New Member
  • *
  • Posts: 19
  • Be extraordinary
Re: New USC Acoustic Neuroma Center in Los Angeles
« Reply #14 on: November 26, 2013, 11:05:17 pm »


I left USC feeling very positive - but like a lot of people, I suppose, I'm optimistic and scared s***less at the same time.  :)


Hello,

I was skimming the posts and just had to comment, I have a Middle Fossa surgery scheduled on 12/10 with Dr. Friedman and Dr. Giannotta, so we will be at USC/Keck at the same time! I think what you said was perfect, I feel confident and optimistic but am still nervous at the same time.