It seems like less surgeons are training in hydrocephalus surgeries than ever before. When I started searching for doctors in 2003 I only found 17 at that time on the hydrocephalus Associations web site. That was total in the Untied States. Not in my state.
In Asheville surgeons are now referring babies Duke because they are the only hospital locally that does shunts on babies. From here Asheville is nearly a 4 hour drive.
I was a patient at Duke and had my first programmable shunt placed in 2002. It was faulty but doctors had a very difficult time determining the problem. They did not realize it was faulty at the time. The shunt would be set at a setting I was given a certain amount of time to adjust or I would have systems of failure and need to return within 2 to 3 week.
I was constantly having complications with the shunt. I was not having complete shunt failure so I was unable to have the hospital transport me by ambulance to Duke. If I was seen as having an emergency transportation would have been available to Duke. Just not back home.
If I was in failure. I could go to the Asheville ER and once confirmed I was in failure I could be transported to the hospital. Duke never told me this. I was always instructed to come straight to the ER at Duke.
What is really concerning. It seems less surgeons are studying about hydrocephalus and researching new shunts.
What does a low income family do that can't afford to drive to Duke for treatment for their child? I question how will I be able to drive to Charlotte if something happens to my parents.
I drive but Charlotte is just really too much for me. When I was in my early 20s I drove to Charlotte. This was before all the complications with my hydrocephalus. I even stayed over night thinking the drive back would not be as bad. But my nerves were shot coming back home. Then of all places my doctor has to be the one town I have night mares driving in.
With so many new kids going into college everyday. Why do we not have more neurosurgons that specialize in hydrocephalus. The ratio of children born everyday with hydrocephalus is still 1 in 500 children everyday we have got to keep speaking out and making people aware of our need.