Does where you live influence how your vestibular schwannoma is managed?

[Citiview]

Research paper by Matthew L. Carlson Amy E. Glasgow Brandon R. GrossardtElizabeth B. Habermann Michael J. Link

http://link.springer.com/article/10.1007%2Fs11060-016-2170-5

Abstract

The management of small- to medium-sized vestibular schwannoma (VS) remains controversial. Despite a lack of compelling evidence supporting one treatment modality over others, many providers and institutions remain highly biased toward one particular therapy—microsurgery, radiation, or primary observation. The objective of the current study was to estimate the impact of geography on disease presentation and initial treatment of VS in the United States. An analysis of the Surveillance, Epidemiology, and End Results (SEER) database identified 9761 patients with VS that were managed across the 16 SEER geographic registry areas. Univariate analyses demonstrated strong associations between geographic location and tumor size at diagnosis (P < 0.0001). When analyzing the 6115 subjects with tumors between 0 and 3 cm in size, multivariable models identified strong associations between place of residence and treatment modality (P < 0.0001). These multivariable models demonstrated that in many cases the impact of place of residence on treatment selection was greater than other established variables such as tumor size and age. To our knowledge, this is the first study to evaluate geographic trends in VS patient demographics, tumor size and management in the United States. These data suggest that disease presentation and treatment modality are significantly influenced by regional referral patterns, provider or institutional treatment preferences, and regional availability of subspecialty expertise. Understanding geographic bias is important for patients, referring physicians, and treatment providers alike. Until there is clear evidence supporting one therapy over others, multidisciplinary consultation with a minimum of a neurotologist, neurosurgeon, and radiation oncologist or radiosurgeon should be offered in order to provide balanced counseling and accurate informed consent.

[ANSydney]

Thanks Citiview. I'd love to read the full article, but the abstract is provocative. As the abstract says "many providers and institutions remain highly biased toward one particular therapy". In a well informed community, one treatment method would have evidence of being superior.

As the article says, "Until there is clear evidence supporting one therapy over others, multidisciplinary consultation with a minimum of a neurotologist, neurosurgeon, and radiation oncologist or radiosurgeon should be offered in order to provide balanced counseling and accurate informed consent."

It's up to us to navigate through the minefield and find the best solution. Sad, but true.

[Citiview]

The paper is very interesting. Dr. Link is one of the Co-Chairmen of the ANA. They do a lot of nice work over there at Mayo. They are publishing a lot of papers and doing a lot of good research.
The most cumbersome part of the process after being diagnosed, like you said, is the minefield of information. Some people, however, make up their minds very quickly about treatment and go for it. You just have to make sure you are in a good place with excellent doctors. I think the reality slap for me is the fact that no matter what treatment you choose, there are difficult consequences. Even in very successful treatments, there can be tough things to deal with. The best case scenario is that you take your time, research your options, and make a decision that you are happy with. Hopefully you have an excellent result. Good luck.
If you want the research paper PM me and I'll mail it to you. I have a hard copy of it.
The paper focuses on regions of the United States, so I'm not so sure how pertinent it would be to Australia.

[CHD63]

As always, we encourage patients and/or their caregivers to read the research being done related to acoustic neuroma and treatments.

Just a tiny correction/clarification:  Dr. Link is one of the co-chairmen of the Medical Advisory Board of the ANA.

https://www.anausa.org/about-ana/what-is-ana

Thanks.

Clarice

[ANSydney]

Hi Citiview, thanks for sending me the paper. Had a read of the paper and trying to convert what I've read to something tangible for us ANers.

The disparity across the US is outstanding. Even in California, in LA surgery is far more favored but as you move to SF it becomes more observation or radiation oriented. And in New Mexico, surgery is seldom used. And in Kentucky your most likely to be in the observation group.

This suggests to me that different areas have different areas of expertise. Los Angles would be distorted by the House Ear Institutes surgery expertise.

Again, the abstract has the most important message, which is, "Until there is clear evidence supporting one therapy over others, multidisciplinary consultation with a minimum of a neurotologist, neurosurgeon, and radiation oncologist or radiosurgeon should be offered in order to provide balanced counseling and accurate informed consent".

It would be nice to have a good method, but having three methods will drive surgeons and radiosurgeons to improve their outcomes as well as the increased interest in observation. (BTW, read an interesting paper by Battaglia et. al. from 2006 which has "control" rates of 87% for observation!) Nothing like competition to drive innovation. We've come a long way from one hundred years ago when 80% of surgery resulted in death to today's figures. What will the future hold?

(I assume Fig. 1 is the graphical representation of Table 5, but I could not get them to match. Not sure what is wrong.)

[Citiview]

ANSydney

I'm glad you found the paper interesting. Regarding Fig. 1 and Table 5, is there a problem with the pdf? My scanner put all the scans together like that. I don't have the entire Adobe Suite right now so I couldn't edit the pdf. I only have Reader. Let me know if the pdf needs to be tweaked and I can get access to the software to fix it. We got about two hours of sleep last night due to the Election, so we are running on fumes here.

[ANSydney]

The paper came across perfectly. It's just reconciling the graphical data to its numeric source.

(I also watched the US election, however, fortunately for me the interesting bits were from midday to about 7:00 pm (Sydney time) when Trump gave his victory speech.)

[Citiview]

Looking at it, it seems that Fig. 1 is a graphic for Table 4.

An interesting fact is that other high surgical areas, other than LA, were Detroit, Iowa and Utah. New England wasn't included in the study. That's where I'm from.

[ANSydney]

Yes Table 4 looks like the source.

Interesting how if you live/seek treatment in:

LA: 55% chance of surgery
Iowa: 72% chance of surgery

Kentucky: 69% change of observation
Hawaii: 68% chance of observation

Connecticut: 62% chance of radiosurgery
New Mexico: 69% chance of radiosurgery

Considering the more polarized of the 15 regions

So, not only talk to the various specialties, but also do it at different locations!

[Cheryl R]

Iowa has the major center at Univ of Iowa who does ANs on a frequent basis.   Mid fossa or translab.  Dr Bruce Gantz has been doing them for many years.    I am now 15 yrs out from my first AN surgery on 11-01-01       Due to becoming NF2, others were in 2006 and 2008.       Dr Marlin Hansen has been there for a long time also and is doing more of them too.    A friend of mine who is a OR nurse at the VA there says Hansen does them there too.        I have never asked of Hansen does any retrosigmoid.              I was just down to Iowa City this past weekend as have relatives there plus their new Stead Childrens Hospital had tours of the all new facility.    Being a retired nurse made me want to see it.    It is wonderful but has had a good childrens hospital there.          I went up to the floor where the AN patients are cared for.     Had a wonderful talk with 2 young RNs.    A couple nurses I knew have now retired.           They said they can have 3-4 AN patients a week and rarely none.     I know Gantz does travel some and does lectures.                My fingers are always crossed that I never end up there again but has been 8 yrs now.              I know Iowa does many out of state patients plus years ago he said he did more midfossa than Mayos which is close to Iowa.                               Cheryl R

[arizonajack]

My answer to that question is "yes."

I am fortunate to live in Phoenix, AZ, the home of the Barrow Neurological Institute. BNI has an Acoustic Neuroma Center that offers both radiosurgery and microsurgery with no bias for or against either.

After my obligatory months of research, the choice of a neurosurgeon and a facility was a no-brainer for me, primarily due to location with all other things being equal.

[Citiview]

Regional differences and referral patterns matter. I live in a region where, to my knowledge, middle fossa surgery for hearing preservation is not offered. That leaves one with fewer choices. It also means a huge economic impact if you want to travel. I hope mine stays small. Thanks for the replies.