Insurance for "out-of-state" Cyber Knife treatment at Stanford

[mcrue]

I live in Michigan with Blue Care Network HMO. They told me I could only have Cyber Knife treatment ( or any other AN treatment) locally in Michigan (regardless if i switched to their PPO).

They also went out of their way to inform me that my ENT could NOT refer me to anyone (let alone Dr. Chang in Stanford, California). They said only my Primary Care doctor could refer me (and only if I didn't originally ask my Primary Care about Dr. Chang).

In other words, my primary care doctor (who knows nothing about Acoustic Neuromas) would have to be the one who brings up Dr. Chang and Cyber Knife treatments for acoustic neuromas. As if my Primary Care doctor would randomly know about Dr Chang all the way across the USA at Stanford, California.

To make a long story short, it sounds like it would be a very long, complex, drawn-out LOSING battle at the end of the day with my current insurance Blue Care Network HMO (BCN of Michigan).

I then decided to call another insurance company called Blue Cross Blue Shield of Michigan (BCBS of Michigan). They told me they had about "42 different PPO's" available, and their open-enrollment begins on November 1st (to be effective January 2016).

They said I would be covered for out-of-state Cyber Knife with Dr. Chang; however,  they didn't go into detail about the monthly premium charges, the deductibles, and what percentage they would cover of the CK treatment out-of-state with Dr. Chang.

They said I had to "wait until November 1st" when they would have their "new pricing" available for open-enrollment.

I called Dr. Chang's office and they indicated that their CK procedure would costs roughly $85,000 - $100,000 cash (plus hotel, plus airfare, food, etc.)
 
Has anyone been successful having their local insurance cover a specialist from out-of-state like Dr. Chang at Stanford, California?

My current local insurance says "as long as we have someone locally who can do the treatment then we will always deny you."

I know insurance is a business, but when we're dealing with the BRAIN, MY BRAIN, I would rather go to someone who treats over 500 Acoustic Neuromas BRAINS every year (for decades) like Dr. Chang at Stanford.... rather than some local guy in Detroit who perhaps does the treatment once or twice  a month specifically for acoustic neuroma.

We're not talking about a hand or a foot. We're talking about my brain!

Anyways, perhaps I should switch to Blue Cross Blue Shield of Michigan in November (coverage effective 2016) and then switch back to my current insurance the following year after my treatment has been completed with Dr Chang?

What should I do?

Any advice would be helpful.

[sandyinwisconsin]

Dear Mcrue: 

I was in the same boat as you in Wisconsin.  I was totally devastated. 
My ENT referred me to Dr. Gantz of Iowa, and my insurance company said absolutely not.
My insurance gave me the name and address of a third party organization who listens to both sides of the case and
they determine what should be done.  I lost with them too.  They said I could have any procedure I wanted
in Milwaukee, Minneapolis, or Madison.

As it turns out, I went through multi radiation treatments in Madison and I think I ended up with probably one
of the best radiation doctors in America.  I don't mean to brag, but things are going super great for me.  December will be my
2 year anniverary. 

Michigan Ear Institute and University of Michigan are two well known treatment centers in your area.  I know exactly how you feel,
but it may turn out for the best like mine did.

Please let me know if I can help at all.

Sandy

[mcrue]

Sandyinwisconsin, thank you for the encouraging words.

You had 26 treatments with cyber knife. I thought the usual is 3 to 5 treatments with CK? I  thought 26 treatments was usually reserved for  Proton Beam Therapy.

That's awesome that you are doing well 2 years later. Did you have Tinnitus before or after treatment? I heard CK can make tinnitus worse?

The motto of this website is to find a doctor/team who has some of the most experience treating acoustic neuromas successfully. I think in the very first newsletter I received from the AN foundation (4 weeks ago), there was an example of 2 car mechanics who claimed to have "experience" fixing engines.

One mechanic had experience with 250 engines that he worked on, and the other mechanic had experience on 10,000 engines.


I'm glad you can relate to how I feel that this is why I want to see Dr. Chang for my brain. I am currently on "watch & wait" until January 2016, so I may just change insurance for the one year since there are no longer any "pre existing" condition restrictions for signing up for insurance these days.

[ANGuy]

Experience is critical.  But, doing a couple of AN's a month is A LOT.  I see repeatedly claims of "thousands" of procedures etc being thrown around and I'll say this:  I don't believe them.  There are not enough AN's in this country to support some of the claims I see posted about "my doctor".

I'm not talking about the Dr and number you referenced.  What I am saying is that my Dr told me he does 2 or 3 a month and that that is a lot.  500 a year would be roughly 20% of all AN's diagnosed in the entire nation.  Think about how likely it is that that would be the case.  Think about the likelihood of one Dr performing 2 such procedures a day, 5 days a week, for an entire year.

If a neurotologist does 30 AN procedures a year, along with cochlear implants, all the other kinds of delicate surgeries that they do, along with research, teaching, and in-service training, along with publishing and report writing, never mind that they go on vacation and play golf too, it is a lot of AN's.

There are many Drs. in the USA that do these procedures regularly and with good results that are completely unheard of on this forum.   This forum is comprised of basically a handful of people who have AN's.  There are thousands of people with AN's who have had treatment that have never registered with this board and you wouldn't hear of their positive experiences with Drs. never, or rarely mentioned on here.  My Dr is a good example.  Search "David M. Kaylie" on here and other than my posts, you will find very little mention of him.  I think Clarice is the only other member to have experience with him.  Yet, he is a premier provider in this field who even patented a device for monitoring the facial nerve during these surgeries and he works out of a facility that people like Ted Kennedy and Preston Robert Tish, millionaires who could have gone anywhere, went to.

I've never been to Michigan, much less researched AN treatment providers there.  But, my guess is that there are some very good neurotologists who who practice in Michigan who very likely got their training by working under people like Dr. Chiang.  In fact, I would contact him, as well as other well known Drs. in this field and ask them who they may have trained that practice in Michigan.  Call House Clinic, and others and see what Drs who used to be there are now in Michigan.

Here is an example of what I mean.  A good friend of mine is a highly regarded plastic surgeon who specializes in facial nerve reconstruction.  He trained at Duke and Johns Hopkins.  He has all the experience and training and reputation of a "superstar" in this field.  He laughingly told me about how when he lived and practiced in upstate NY, people didn't understand that he was still a premier guy in his field.  In other words, if someone in Buffalo NY had a disfiguring facial trauma, they would be looking right past him trying to find a "good" surgeon somewhere else.

[sandyinwisconsin]

Hi Mcrue,

I did not have a cyberknife machine.  My treatment was with a varian truebeam linear accelerator.
My doctor said it's an exceptional machine.  I was fitted with a mask just like CK and went
in for 26 days.  Each treatment lasted 15 minutes.  He felt that receiving a high dose of GK or even CK
would damage more of my hearing, etc.  He could have done one shot, but wanted what was best for me and
wouldn't have it any other way. 

Here is a link to the machine's website.

https://www.varian.com/oncology/products/treatment-delivery/truebeam-radiotherapy-system

Sandy

[mcrue]

Thanks ANGuy and Sandyinwisconsin,

Madison is looking really good right now haha.

I wonder if they have one of those TrueBeam treatments in Michigan? The idea of having radiation spread out over 26 treatemnts sounds good, but i wonder if the statistics for success are equal to regular CK performed over 3 days?

Anyways, something for me to research....

ANGuy,  my ENT claims someone who is "experienced" in AN treatment should be treating AN's at least 1 or 2 per week (or more) for several years. I would never have treatment for my brain from someone who only treats AN's  once or twice a month. But I understand your point that experienced doctors can be found locally.

Best wishes.

[ANGuy]

If a Dr is telling you that he does 100 AN patients a year, that means that there are only 30 or so Dr in the US that treat them.  Think about it, do the math.  There are roughly 3,000 AN's diagnosed a year in the USA.  A substantial number each are treated with radio surgery or traditional surgery.  So, like me, do observation but let's just say that eventually all observation patients get treatment, so the ones who put it off now, are being replaced by the ones who can't put it off any longer.  So, 3,000 diagnoses a year, call it 3,000 treatments a year (to keep it simple), and each Dr is doing 100 of them?  And how many of those are of each type?  Let's say 2,000 get traditional surgery, and 1,000 get radiosurgery.  Flip that the other way or split if 50/50, it doesn't matter.  If there are 1,000 patients being treated with say radiosurgery, and each surgeon worth a darn does 100 of them, that means that there are only 10 of those surgeons in the country?  Sorry, but those numbers don't add up. 

[mcrue]

I hear you ANGuy. I'm just saying what I was told

[mcrue]

Does TrueBeam use the same radiation that Cyber Knife uses, or is it a form of "Proton Beam" Therapy?

http://www.mclaren.org/protontherapy/ProtonTherapyTrueBeam.aspx

[sandyinwisconsin]

My treatment was not proton therapy.  It sounds like Truebeam makes proton therapy machines. 
My insurance would not have paid for proton therapy, but
I do think it is going to become the wave of the future. 
Mayo Clinic in Minnesota is putting in 2 machines. 

Sandy

[mcrue]

It sounds very promising.

I hope to be on "the other side" of treatment one day; hopefully,  with a success story like yours!

[mcrue]

FYI... I ended up switching to the very best PPO (from my HMO) that was offered in my state during the annual insurance open-enrollment period Nov-Dec.

I then scheduled treatment in early 2016.

I can switch back to my previous HMO again during open- enrollment period Nov-Dec this year (if I wish).

The timing worked out perfectly.

If you can afford paying the extra money for the PPO for one year, it will certainly help avoid a lot of hassle, and open infinite doors throughout the country to the top world renowned people.

One of the best decisions I ever made.