I am sooo mad and upset. Late this afternoon, our primary insurance denied my son having surgery "out of network". We live in Philadelphia and I was not happy with the neurosurgeon here who was able to do it. We were supposed to leave for Boston tomorrow morning so that Christopher could have a CTA done on Friday and surgery on Monday! It was really to late to do anything about it today. Spoke to Dr. Scott and he will try to speak to the ins. co. in the morning to hopefully convince them to reverse the decision. My sons 2nd insurance (medicaid) approved both procedures!

I called the neurosurgeon here in Phila. and he wouldn't even speak to me directly on the phone! His secretary was relaying everything we were saying to each other. I asked her to ask him to please call the insurance and tell them he would refer my son to Boston Childrens Hospital and the Dr. said no!

I am freaking out. I already started an appeal with the insurance, but was told it could take up to 30 days! We are all packed, train tickets bought, etc. I am going to wait and see what happens tomorrow, hoping for a miracle!

OMG! I can't believe they told you this so late in the process. I just can't believe that the Dr. can be so arrogant and pigheaded that he won't talk with the insurance knowing this is what's best for your son. My daughter's Dr's first phone call after her diagnosis was to Dr. Scott to see if he would confirm the diagnosis and do the surgery for her. He cared about his patient... That's the big difference. I would definatly NOT want a surgeon who had such a lack of professionalism performing surgery on my child. I will pray that this can all get worked out in time to keep your son's shceduled surgery in Boston. You must be sooo besdie yourself right now I'm so sorry.
((((warm hugs))))
Mary Grace

We had a similar situation.  Our insurance is an HMO and they didn't want to send Daniel out of network either.  The doctor who is in network is an arrogant jerk who felt confident in his ability to take care of moyamoya.  In fact, he didn't think Daniel's case was bad enough for surgery.  Dr. Steinberg disagreed and said that his moyamoya was very advanced and required surgery NOW.

What happened is I needed to get a case worker (I can't think of the official name) at the insurance company.  She worked through the system with me.  The insurance company had to send Daniel's scans out to three independent doctors for their opinions.  Then they made the decision that they would approve an out-of-network doctor.  Then the insurance company lawyers had to work with the hospital lawyers to draw up their agreement to work together.

All of that took time.  Daniel spent that time sitting around, doing nothing that would aggravate the blood flow in his brain.  Basically he did nothing but sit and watch tv.

I'm sorry you are going through this.  It is maddening how much power the insurance company has over us.

  Lynn, I so glad you mentioned that. We were given a "coordinator" also again not sure of the official name.  We didn't even have to ask it was common practice to assigne this person when it appeared to be an illness that would require a lot of time and medical care. We were lucky ot have this person in place so while we were in boston we could contact her at any time with a direct number. She actually got kathleen into a rehab hospital at home when the Dr.'s were going to send us home with her with many many physical needs from her strokes. Good luck and keep us posted.

Well, we didn't go to Boston. Surgery has been cancelled for the time being. The insurance company, which is an HMO, spoke to the dr. here in Phila and he told them he was capable of doing the surgery and has the experience. Well, this dr. never even came to see my son while he was in the hospital after his stroke. AT our appt. with him, he walked into the room, didn't introduce himself, didn't shake our hands, didn't talk to my son or check him out. Couldn't answer any of my questions until he looked at Christopher's files and told me he didn't have the MRI/MRA images to review again with me. He also couldn't tell me how many total surgeries he has done.

Late yesterday I called him to try to convince him to refer Christopher to Boston. He wouldn't even talk to me directly on the phone. His secretary was the go between, relaying what we had to say to each other. And he flat out told me he wouldn't do it. He is a piece of SH&% (excuse my language). He is acting like a child, if he can't do it then nobody can!

Tomorrow morning I have an appeal over the phone with the medical director of Keystone Health Plan. Today I spent talking to the committee people and congressmen in Philadelphia. One of the congressmen, Bob Brady, is trying to intervene. I also have a good friend of mine who is a lawyer joining me on the appeal tomorrow. If by some miracle, it goes my way tomorrow, the surgery will be rescheduled for May 31. I have spoken to Dr. Scott many times and his office has tried to help in every way they can. Dr. Scott even called my insurance and spoke to them.

If it doesn't work out tomorrow, I will be contacting a local news station, Fox 29, to ask if they will air my story. They do this type of thing all the time.  If it doesn't work out, I don't know what i will do. I hate to think of sucking it up and having this dr. perform the surgery. My son can't afford to have this surgery delayed any longer!

Lynn,

My problem seems identical to yours. And I also have not been letting my son do much which is so hard. He does not understand what is going on. He is bored like crazy, because i am afraid to take him to a playground. And he is autistic and throws tantrums on a regular basis, so I have been extremely nice to him! lol

It sicken me to know that these people hold a humans life in their hands! What would they do if it was a family member of theirs.

I hope having the congressman behind you and the local news help! It helped me when I was in the same situation!  They ran a newspaper article on the severity of my condition and my US sentor and US rep took it into their hands next day I was approved two weeks later (so I had time to get the plavix out of my systerm) I was having sugaery! I know how frustrating and devestating it is to have your sugery postponed (same thing happend to me which is why I out of desperation agreed to the newspaper article) I pray your son will be having his sugeary soon!  Best of luck!

One thing I learned is that the pediatrician can give the referral.  Our idiot surgeon wouldn't have given the referral either but he didn't have to. 

Hey Karen...what doc did the insurance company recommend?  Is he from Jeff?  If it's the same one that was recommended to me...when I called, he had only seen about 10 MM patients in the 10+ years that he had been at that hospital.  Their philsopy at the time (could have changed, this was almost 8 years ago) was to treat MM with medication.  Just wondering if it's the same doc....

-Shari

Today's appeal was also DENIED!!!! I am just so mad and frustrated!!! Now, my last resort is an external appeal which is where an independent person, a neurosurgeon, is selected through the department of public health and he reviews all of the information and makes a decision. This is an expedited appeal which is supposed to happen within 48-72 hours, but of course we are now going into the weekend. Christopher's pediatrician was not able to be "found" today to participate in the appeal! It was just and a friend of mine who is a lawyer and has been trying to help me.

The doctor who is they is capable of this surgery, and we have already met with him, is at Children's Hospital here in Philadelphia. His name is Dr. Storm. I never thought he was not capable, but am I wrong to want more than capable?! He told us he does about 1-2 surgeries per month and about 1-2 surgeries per year on children with down syndrome. He couldn't give me a total # of surgeries he has done. From the information I have found on him, he has been a certified neurosurgeon for 15 years. So this is telling me that if he does 2 a month and 2 per yr on ds children he has done 390 surgeries in fifteen yrs. This is pretty good (if it is true)since Dr. Scott is Boston has been doing the surgery for 25 yrs and has done about 700 to date. If it is true, why wouldn't he have told us this, why would't he have "bragged" about how many he has done so far? Why aren't families travelling to Philadelphia to have their children treated here for Moyamoya?

At this point I am just so confused and feel my hands are tied!
:-[

1-2 surgeries a month . . . but are those moyamoya surgeries?  I find it extremely difficult to believe he has performed that many moyamoya surgeries.

Fight it!  Get your child the best doctor you can!

Kim

UPDATE: I found Dr. Storm's (from Phila.) email and sent him a msg last night. He responded and told me has talked to Dr. Scott about this and they are both trying to help get Chris to Boston. Dr. Storm also told me that even with his referral the insurance will not approve due to him being able to do the surgery here. They do not care about how much experience he has. I also emailed Dr. Scott to confirm this and he said yes, they are working together to try to convince my insurance to reverse the denial. I now just have to wait till Wednesday to her something.

If the this appeal is still denied, there is no more I can do. I will just have to put my faith in Dr. Storm and try to ignore the issue of not having a personality at all!

Karen

Karen -

I've been doing some research - in case you need it:

Did you see this thread about Dr. Storm...may ease your mind a bit?  http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1246486528

Also - found another doc at Jefferson - pediatric neurosurgeon who did his fellowship at CHOB... http://www.jeffersonhospital.org/Healthcare%20Professionals/Jeffrey-W-Campbell.aspx

And, one more...at Abington:

http://www.amh.org/services/brain/moyamoya-disease-task-force.aspx

I'm trying to get an appointment with Dr. Shah just so I can familiarize myself with him in case I need someone locally.

Karen,

I am so sorry that you are having to go thru this and that the insurance company couldn't have communicated in a more timely manner.  If you feel at all as I did in a similar situation, you are probably feeling as though you need to be focusing all of your energies on helping your son get through this, and to have to battle the insurance company is so distracting and upsetting. 

I won't go into all the details of my insurance struggles here, but will offer that perhaps, if your HMO insurance is obtained thru your employer,
if at all possible, it might also be helpful to have your employer involved in supporting your appeal. 

My boss ended up going to bat for my daughter, and because he is well-respected by all in our health system (I work for a health system that competes with the other local health system where our surgeon of choice practices, and of course was out-of-network for us, with 0% coverage by the HMO for any out-of-network services), he was able to bring to bear considerable influence on the system Medical Director & HR executives, which finally resulted in me being allowed to change my ins plan mid-year, to the one that provided for some out of network coverage.  So, even though I ended up owing tens of thousands of dollars more than I would have had the appeal been approved for out-of-network coverage from the HMO, we still got to have our surgeon of choice, without having the burden of the crippling medical bills the out-of-network surgery would have resulted in. (There was absolutely no possibilty that the in-network surgeon would have ever been allowed to touch my child - he told me he had done "about 6" MM surgeries in his 15 years of practice - so we were going to Dr. Smith, one way or another.)

Just wanted to share what ended up tipping the scales in our favor in case it might also be an option that could help you, and will be praying that these issues are resolved for you as quickly and as easily as possible.

Best regards,

Jennifer

Shari,

I did come across Abington Memorial Hospital. I have a call into the director of pediatric surgical services. The person I spoke with told me she didn't think they did many of these surgeries on pediatric patients.

And I did read the post about Dr. Storm. I know that he has done the surgery with success (as far as I know). He has not been returning my emails or phone calls the past couple of days. I need to know if he performs bilateral surgery at the same time or if he only does the surgeries separately. Dr. Scott in Boston does do both surgeries at once, under the same anesthesia. I have not checked out Jefferson and don't know if I would feel comfortable going to someone or place who is not for children. I may call them just to find out more info. Thanks for looking into this for me!

Jennifer, I don't think my husbands employer will intervene with the insurance company. There are enough problems where my husband works and I don't think they would become involved in this. They are been on the news a lot already!

Even though Dr. Scott personally knows the dr. here in Phila. He still believes it would be better for my son to have the surgery in Boston. As I said, Christopher needs surgery on both sides and Dr. Scott has done this. I don't know if Dr. Storm has done this because i can't get him to answer my emails or phone calls! Right now, we are scheduled to meet with anesthesia at Childrens in Phila tomorrow for a cerebral angiogram scheduled for May 26. The hospital called me last Friday because Dr. Storm sent a request for this procedure. I figured, I should start the process here in Phila. in case I am denied the final time with my insurance company.

I understand what you are going through I sent all my films to Dr. Steinberg and he said that I need the surgery.  I have medicare and medicaid  and aarp and I got denied.  I was diagnosed in April of 01 and have been trying to have a doctor in Florida and there was no one to help and because they don't want to take the case.  The next step is talking to the state senator. I am not going to stop until I get approved for surgery. I hope that you will get the surgery and everything turns out ok for you and god bless.  >:( :(

Neecieree,
I thought I remembered someone else getting denied here in the Tampa/St. Pete area.  I looked back in the guest book and found the post around Nov 06, 2010.  You might want to go to that post and email her.  She was denied but finally got the surgery done at Tampa General.  She may have some ideas for you.

Donna...we live in Tampa...my daughter has moyamoya and had her surgery in Dec. 2008 at Shands

Do many surgeries  get denied by Blue Cross Blue Shield PPO? I have my records being checked by Dr Steinberg  for surgery there.  I should think they would want the Dr with the best and largest track record.  Anything I can do to get it going if need be?   Sandy R

Sandy,

My sons primary insurance is keystone Health Plan East and they denied right off the bat and also the 3 appeals I went through. The denial is based on there being a neurosurgeon here in Phila that can do the surgery. They DO NOT CARE, if the neurosurgeon in your area is the best, or if they only have done a few surgeries. As long as there is a dr. where you live that can do it, they will not pay for you to go out of network for surgery. This is based on my nightmare of an experience with them.

SandyR wrote on May 21^st, 2011 at 7:31am:

Do many surgeries  get denied by Blue Cross Blue Shield PPO? I have my records being checked by Dr Steinberg  for surgery there.  I should think they would want the Dr with the best and largest track record.  Anything I can do to get it going if need be?   Sandy R

Hey Sandy - even though it's the same company, Keystone and BC/BS PPO, it all comes down to money....Keystone is an HMO and the plan you have (the same one I have) is a PPO plan - more options.  HMO's are more restrictive.  I had the PPO plan, and of course, the plan that my employer negotiated with the provider was that they only paid 90% of the bill.  Yep, totally comes down to money!  Luckily, as long as you're paying something, you can work on a payment plan...which is what I did.

I think, you'd fair better if you put in a certain amount of money each week/month in to a interest bearing savings account rather than putting all that money into insurance premiums and getting denied when you really need that money!  Just my humble opinion!