Insurance Companies and Coverage for Low Dosage CAT Scans

September 3, 2008 - May 28, 2011.  It's hard to believe it now, but as I look back at emails from the period, I spent one year and seven months trying to get my insurance to cover the cost of a low dosage CAT scan.  After our September 3, 2008 visit with Dr. Lewin in which she indicated that Ben would need a CAT scan to see whether he as a candidate for canalplasty, I started to do a little research.

As mentioned in the "Associated Topics" blog, I had been asked by so many specialists over the years to get a CAT scan of Ben - and I'm so glad that I followed the advice of my pediatrican who said, "Don't do it yet!"  The amount of radiation that a child is exposed to from a CAT scan is thousands of times more than an x-ray and it is at levels intended for an adult.  In addition, the reason why radiation is considered dangerous and a potential carcinogen is because of the possiblity that radiation can cause cell mutations.  If the cell mutation happens in a 60 year old, there is much less time (between 60 and the end of the 60 year old's life) for the cells to become cancerous.  In a child, there is an entire lifetime during which the cells can grow and become cancerous.  Furthermore, a child goes through much more dramatic growth than an adult.  Therefore, there are lots of reasons why it's a good idea to be circumspect about the amount of radiation to expose your child to.  Yet most CAT scan machines are built with only adult proportions in mind.  Since the machines are incredibly expensive and need to pay for themselves and then generate revenue for the hospitals, it's not "worth it" for hospitals to invest in additional low-dosage machines.  For microtic children, knowing that surgery was not an option until, at the earliest, three years old, why expose a baby or toddler to the radiation?

When I called the California Ear Institute (CEI) to inquire about the annual conference, Sheri Bryne (who is a wonderful resource for microtia but who no longer works at the CEI :(  infomred me that Dr. Joseph Roberson's office had a special low dose radiation CAT scan machine made by Xoran that generates more accurate CAT scans with 1/10 the level of radiation.  We proceeded to get a hand-written note from Dr. Lewin and my pediatrician, Dr. Keene to my insurance company, about the need for the low dosage CAT scan (of which there are none at all of the radiation labs in all of the hospitals associated with Cedars Sinai in Los Angeles)!  The claim was denied and the only CAT scans that they would refer Ben to were those at Cedar Sinai Hospital with "regular" CAT scan machines at regular adult levels of radiation.  I have copies of all of these notes and email exchanges between the different parties - it ain't pretty.  We sent articles, research, went through an appeals process - everything.  No dice!  After trying for over a year, I finally decided that time was ticking and I would pick up the tab myself.  Interestingly, Cedar Sinai is also one of the hospitals in the US that was caught over-radiating patients.  Here are two good articles on this topic, one overview and one more specific that includes reference to Cedar Sinai.

Anyway, even though insurance would not pay for it, after a year and a half +, I ended up just calling Dr. Roberson's office in Palo Alto.  They happened to have a cancellation the following day, and I cancelled my appointments the following day and high-tailed it to their Palo Alto offices for a Xoran CAT scan.

Initial Visit to Dr. Sheryl Lewin - September 3, 2008

September 3, 2008.  We first visited Dr. Lewing when Ben was shy of three years old.  Initially we went to see Dr. Lewin because (1) our pediatrican had referred us to her, (2) we knew she worked with "the best surgeon for Medpor," (3) I had heard from someone at LAUSD that her ears were actually very good, and (4) she was covered by my insurance.

After visiting with Dr. Lewin, we were definitely impressed by the number of microtia repairs she had done, and by how good they looked.  Check out this YouTube video of a number of before and after Dr. Lewin patients.  Also, Dr. Lewin is very personable and nice.  While both she and Dr. Reinisch clearly have a deep love of their patients, she has a more maternal and playful personality than Dr. Reinisch.  (Update as of August 2012: As of the beginning of 2012, Dr. Lewin is no longer practicing with Dr. Reinisch.  Click on this link to see her independent practice website.)  By this point, Ben was about three +, and that is around the age when the surgery can be considered.  By the time we met with Dr. Lewin, I think that both my husband and I thought that, if we were to do Medpor, she would be just as good to go with as Dr. Reinisch, her mentor.

Dr. Lewin said that if we were considering getting the atresia repair surgery or the combined microtia/aural atresia surgery, we needed to get a CAT scan of Ben's ear anatomy to see if canalplasty were an option.  A short summary of the timing and key differences for the two methods:

• Medpor approach:
• The Medpor approach uses a synthetic medpor frame to create the shape of the ear.  The main disadvantage is concern that if the ear is traumatized through an accident or sports and the ear is cut, the medpor could be exposed and necessitate surgery to repair.
• If the patient is going to have canalplasty, the canalplasty surgery happens first, then the medpor microtia repair follows.  Surgery can begin as young as three years of age.
• This method is much newer than the rib graft method, so there aren't examples of people who have had the medpor framework for 20+ years like there are for rib graft.  However, medpor has been used in bodies for a long time; and medpor seems to last.
• Dr. John Reinisch is the pioneer of the medpor method.
• Rib Graft approach:
• The rib graft approach has been used for a much longer period of time and has a long-term track record of success.  It uses the individual's own cartilage (from between the ribs) as the framework of the ear, so any injury to the ear would heal the way the body heals.
• If using the rib graft approach to microtia repair, the microtia repair happens first and then the canalplasty follows.  Because this method requires that the cartilage be large enough to be sculpted into an ear frame shape, the child must be at least eight years of age to start surgery.  Removing the cartilage essentially requires one more "step" than the medpor approach - but the benefit is the 100% organic origins of the framework.
• Having a skilled and experienced surgeon is critical for both approaches, but it's particularly important for the rib graft approach because the cartilage framework is carved by the surgeon during the surgery.
• Dr. Burt Brent is one of the best and leading pioneers of the rib graft method.