Referral #3-Cincinnati

The whirlwind continued in March as we were able to get in to see the neurosurgeon in Cincinnati only a few weeks after our Chicago trip. After a trip to University of Chicago, the commute to Cincinnati Children's seemed like a walk in the park!  Parking was only steps away from the check in desk and they validate parking!  None of this truly mattered to us since we only care about the care G will receive, but was a nice change from Chicago.

Our staff experience at Cincinnati was similar to Chicago.  Everyone was so very helpful and kind.  They truly understood we were deer in headlights and needed a ton of direction.  I have found that even though I have 10 years of healthcare background, most of my clinical knowledge goes down the drain when it comes to the care of my own child.  Both facilities were great about recognizing this and talking to us at a level that both DH and I can understand.

I was so very impressed as soon as I walked into the waiting area.  I saw that they had a full bulletin board with a ton of information on Chiari Malformation.  I knew we were in a good spot.  We arrived about 25 minutes early, and were called back within 5 minutes of registering. The lack of wait was amazing to me.  I figured it was a fluke, but when we returned in June, it was the same wait time.  They have something figured out!

During our appointment, we met with both the physician and his Nurse Practitioner.  Both were extremely well versed in Chiari.  Being the type of person I am, I had a book full of questions. Some of the questions were used to see HOW they were answered, not WHAT information they were answered with. The impression I got from this office, is that they are conservative, and do not operate unless symptoms prompt them to do so.  Their surgical incision approach is somewhat more conservative as well. This particular doc makes a smaller dura incision, but in a 'Y' formation.  This allows for more expansion, with less cutting.

We met for approximately an hour with both the MD and NP in the room.  G's exam didn't seem to change much since the Chicago appointment which was good.  A long discussion revolving around the connective tissue disorder occurred.  This doc's take was that there was some precautions he would take if there was a chance G had it.  He requested that we see a geneticist in Chicago who specializes in the connective tissue disorder before deciding whether to perform surgery.

We left with a great feeling about this office.  IF we decide to do decompression surgery, Cincinnati is the front runner as of late March.