PLEASE HELP ME!!!!

[nycnewbie]

I am feeling so lost. Basically, I have Aetna PPO. I am going in the direction of retrosigmoid. I would definitely have said yes to Cornell already if they took my insurance. I don't think they take any insurance. I do have out of network, but it's 70/30 and I make little money. On the flip side, Johns Hopkins takes Aetna. The problem is I can't get in to see the neurosurgeon until July.
Do you think Insurance coverage and getting it covered network should be the deciding factor?

[MissMolly]

Sorry you are feeling so lost and stressed!  It's difficult enough to have to deal with an AN without having to negotiate insurance coverage.

The good news is, these tumors grow slowly and give us time to truly research what is best for us in the long run.  So seeing a surgeon in July isn't necessarily a long wait.  I had to wait over a month to see mine here in Boston.  Where do you live?  Right in Manhattan?  You should have your choice of a number of excellent neurosurgeons and otoneurologists nearby, if you do. 

You may find that your insurance will allow you to choose a neurosurgeon if your primary care physician supports it.  My insurance here in New Hampshire wanted me to go to Lebanon to get the surgery done.  I said I wouldn't feel comfortable with anything less than Mass Eye and Ear in Boston.  After consulting with my insurer (HMO Blue) and getting a recommendation from my PCP I was able to get a letter of coverage. 

Good luck with your decision making and try to stay sane!  Lots of us have been through this and you will find many of us to be very helpful. 

Miss Molly

[jerseygirl]

Hi,  Nycnewbie,

I also live near NYC and researched a lot of neurosurgeons there. An excellent one is Dr. Sen of Roosevelt hospital. He accepted Aetna PPO in network when I saw him two years ago. Let me know if you need help finding him.  Good luck! House also accepted AETNA, by the way. You would have to check whether they do now.

                    Eve

[CHD63]

I know nothing about Aetna ..... but if I were you, I would certainly contact your first choice neurosurgeon's office and ask his/her staff if they have anyone who would be willing to negotiate with your insurance company for you.  (IMO, they make big bucks for this procedure and should be willing to help their patients on this.)

You have enough to think/worry about without this added burden.

Insurance was something I really did not want to think about when I had my surgery.  Fortunately my neurosurgeon's office assistant was absolutely wonderful and took care of every tiny detail related to contacting/negotiating with my insurance company.  I went out of state for my surgery but she was able to convince my insurance company to cover it as an in-network claim.

Unfortunately you may have to be aggressive or at least very assertive to have the best surgeon possible.

Good luck and keep us posted.  Clarice

[Rich56]

Hi nycnewbie,

I am very sorry that you are so distressed.  You certainly have enough to deal with.

As you know, this site is about support, but we also shoot straight, no BS.

Scarlett and I just went through this our selves.  The operation is expensive.  Insurance is a big deal, and you need to get the most out of the coverage that you have. 

You definitely need a hospital that will accept your insurance (at it’s maximum benefits) and has an experienced surgical team that you feel comfortable with.  Remember, there is no substitute for experience.

They say that ANs are slow growing.  Is it possible for you to get an appointment with Johns Hopkins if that’s one of your choices, and continue to find other hospitals that accept your insurance in the mean time?

Just a thought, Boston’s MGH/MEEI is only about 4 1/2 hours from NYC.
Others may have some ideas of hospital/teams as well.

I hope things come together for you,

Rich

[Kate B]

I am feeling so lost. Basically, I have Aetna PPO. I am going in the direction of retrosigmoid. I would definitely have said yes to Cornell already if they took my insurance. I don't think they take any insurance. I do have out of network, but it's 70/30 and I make little money. On the flip side, Johns Hopkins takes Aetna. The problem is I can't get in to see the neurosurgeon until July.
Do you think Insurance coverage and getting it covered network should be the deciding factor?

Hi,
The first thing to keep in mind is that these tumors are typically slow growing, so a July appointment in the life of an AN is short range.

Regarding insurance, it is discouraging at times to navigate the system.  Most likely there will be a case manager assigned through your benefit office. They can try to negotiate with the hospital and doctor to become an in network provider.

Relative to your question about whether or not network coverage should be a deciding factor....Every piece including insurance plays into the decision making process and the accompanying financial piece.  To me, the highest priority has to be your doctor.  You have decided on the type of surgery and Cornell only to find out that Cornell does not accept Aetna. When you mention that you don't think they take any insurance, are you referencing the hospital or the doctor? 

So my next question would be is there another place where can you get a "gold standard" doctor who performs retrosigmoid and takes Aetna?

When we spoke, it sounded like House took Aetna.  With Seton Hall being affordable, it down plays the cost of traveling to California. The 30% you would pay  out of pocket to stay at Cornell would be more significant than the 12 or so day stay in California. Having done the travel, it is not as outlandish as it seems.

From our phone conversation, I remember that you have Chicago ties. There are many good doctors here that do retrosigmoid including Dr. Wiet, Batista, and Leonetti.  Any chance of coming to Chicago for your surgery where you still have contacts?

I know this is that part of the AN journey, where things seem muddied.  Soon it will all come together. Don't despair.

All the best,
Kate

[nycnewbie]

Kate,
I would go to House, but it seems like they prefer middle fossa and that is mostly what they do, right?
They don't really do retrosigmoid.

I am feeling so lost. Basically, I have Aetna PPO. I am going in the direction of retrosigmoid. I would definitely have said yes to Cornell already if they took my insurance. I don't think they take any insurance. I do have out of network, but it's 70/30 and I make little money. On the flip side, Johns Hopkins takes Aetna. The problem is I can't get in to see the neurosurgeon until July.
Do you think Insurance coverage and getting it covered network should be the deciding factor?

Hi,
The first thing to keep in mind is that these tumors are typically slow growing, so a July appointment in the life of an AN is short range.

Regarding insurance, it is discouraging at times to navigate the system.  Most likely there will be a case manager assigned through your benefit office. They can try to negotiate with the hospital and doctor to become an in network provider.

Relative to your question about whether or not network coverage should be a deciding factor....Every piece including insurance plays into the decision making process and the accompanying financial piece.  To me, the highest priority has to be your doctor.  You have decided on the type of surgery and Cornell only to find out that Cornell does not accept Aetna. When you mention that you don't think they take any insurance, are you referencing the hospital or the doctor? 

So my next question would be is there another place where can you get a "gold standard" doctor who performs retrosigmoid and takes Aetna?

When we spoke, it sounded like House took Aetna.  With Seton Hall being affordable, it down plays the cost of traveling to California. The 30% you would pay  out of pocket to stay at Cornell would be more significant than the 12 or so day stay in California. Having done the travel, it is not as outlandish as it seems.

From our phone conversation, I remember that you have Chicago ties. There are many good doctors here that do retrosigmoid including Dr. Wiet, Batista, and Leonetti.  Any chance of coming to Chicago for your surgery where you still have contacts?

I know this is that part of the AN journey, where things seem muddied.  Soon it will all come together. Don't despair.

All the best,
Kate

[nycnewbie]

I mean I really do like Cornell for Retrosigmoid. I am just hoping here might be a way for them do discount the 30% I would have to owe.

Hi nycnewbie,

I am very sorry that you are so distressed.  You certainly have enough to deal with.

As you know, this site is about support, but we also shoot straight, no BS.

Scarlett and I just went through this our selves.  The operation is expensive.  Insurance is a big deal, and you need to get the most out of the coverage that you have. 

You definitely need a hospital that will accept your insurance (at it’s maximum benefits) and has an experienced surgical team that you feel comfortable with.  Remember, there is no substitute for experience.

They say that ANs are slow growing.  Is it possible for you to get an appointment with Johns Hopkins if that’s one of your choices, and continue to find other hospitals that accept your insurance in the mean time?

Just a thought, Boston’s MGH/MEEI is only about 4 1/2 hours from NYC.
Others may have some ideas of hospital/teams as well.

I hope things come together for you,

Rich

[Kate B]

Kate,
I would go to House, but it seems like they prefer middle fossa and that is mostly what they do, right?
They don't really do retrosigmoid.

I believe they do..you can post that question or call House back. They will do more than one consult.

When you spoke with Dr. Brackman did he tell you why he recommended Middle Fossa?  Why did the Cornell doctor prefer Retrosigmoid?

[Rich56]

I mean I really do like Cornell for Retrosigmoid. I am just hoping here might be a way for them do discount the 30% I would have to owe.

hi nycnewbie,

I guess I don't understand how your particular coverage works out, and what your expecting the 30% to be, could you enlighten me? 

Here is how our Highmark BCBS PPO plan worked:

1.   Our plan is 90/10 after all deductibles.
2.   Deductibles were $100, and $200 for the hospital stay.
3.   Our maximum out of pocket is $1500.
4.   We still have to pay $20 co-pays.

Rich

[NL]

Kate,
I would go to House, but it seems like they prefer middle fossa and that is mostly what they do, right?
They don't really do retrosigmoid.

Hi nycnewbie,

I can't really help you on the insurance question, but I'll add my two cents about retrosigmoid and House Clinic.

Granted, the preferred choice of approach for the surgeon would depend on the location of the tumor, but I had a retrosigmoid surgery last August performed by Dr. Rick Friedman and Dr. Marc Schwartz at House Clinic. Another forum member, GARZAP, also had a recent retrosigmoid with the same team. We both had great results, but she scored a home run...they saved her hearing, too. 

I'm not a doctor, but I believe generally retrosigmoid approach is used when the tumor is mostly in the CPA (cerebellopontine angle).

Best of luck with your decision - and your insurance. 

Nancy