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

  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.

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.

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.

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!

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 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

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. 

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

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



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!