After the hand appointment we went and had a head CT series done to try and check on Ashleigh’s shunt. She has seemed more sleepy and not as quick with her movements the past few weeks. In the past these very subtle changes have been a precursor to a shunt failure which requires a shunt replacement and inevitably a major setback in any gains she has made.
(A tip for families when getting CT’s or x-rays. Ask the technicians for a copy while they are printing the one for the doctors. We always have success getting a copy and this will allow you to build a set that you can have to take with you to the ER if necessary.)
This is Ashleigh’s fourth shunt in six years. Some people have shunts that work trouble free for years and years. She has had no such luck. Ashleigh’s problems have mainly been with the shunt tube clogging where the shunt drains in the abdomen. The first failure was the worst. We could not convince our neurologist that there was a problem. We did talk him into checking with the neurosurgeon. The neurosurgeon said no, shunts do not partially fail or slowly fail, they are either on or off. And, if hers was off there would be rapid, significant symptoms leading to coma. Meanwhile we saw Ashleigh getting more lethargic, less responsive, and losing some of her movments.
This was the last straw for this doctor and his pompous, negative attitude. We called a doctor who consulted on Ashleigh when she was in rehab in Cincinnati. Dr. Van Loveren stunned my wife and I when he suggested we test the shunt. There is a test? Why hadn’t our other doctors suggested such a test? A radioactive dye was injected into the shunt and a series of x-rays taken to see how long it took the dye to pass through the shunt and its tubing and into the abdomen. In her case, the dye never came out of the tube. A surgery was scheduled and her first shunt revision took place.
Dr. Harry van Loveren was the total opposite of the neurosurgeon we had been dealing with. He would walk into the room and pull up a chair and ask a ton of questions and wouldn’t leave until all of our questions were answered. He talked to Ashleigh directly and often would hold her hand while we talked. This from a well-known doctor who often had other doctors from around the world shadowing him and traveled extensively yet when he was in the room with you, you felt you had his total attention and as much time as needed. He is as good of a person as he is skillful as a doctor.
We were very disappointed when he moved to Florida but we wish him continued success. Ashleigh still hopes to hold him to his offer to take her tandem skydiving with him one day. She would go tomorrow if she could.