Emergency! Are You Prepared? (part one)

A patient’s perspective

by Bob R., Ohio

My daughter Becky was sharing a ride back to college. When exiting the main highway and taking the off ramp, which was icy, they hit a large light pole. Police, ambulance and a tow truck arrived and took them off to the hospital to be sure everyone was okay. This all seems pretty normal for most people. However, my daughter is not “most people”—she has VHL.

Becky said she felt OK, but her neck was a little sore or stiff. To be on the safe side, they ordered a scan. Up until now, she was not overly concerned about any injuries. A random scan for someone with VHL can become an alarming thing for medical providers who are not familiar with you or VHL.

When they got the results of the scan, they admitted her to the hospital and called a neurologist and neurosurgeon. They told her that they had discovered something on her spine and brain stem that might have been a result of the accident, and advised her to call her parents.

Now at this point, Becky herself became concerned—maybe she did receive a more serious injury than first thought! I received a telephone call from a very concerned daughter about possible severe injuries resulting from a car accident. She asked if my wife and I could come. Obviously, we said that we would be there as soon as possible, but the 150 mile drive would take a little while. I asked if the doctor was available to speak to me.

 The Emergency Room doctor came to the tele­phone and expressed his concern about the possible injuries to both my daughter’s spinal cord and brain stem because of spots that showed up on the scans.

 You can imagine my relief knowing that I had in my house previous copies of MRIs and radiology reports that would show these areas with the spots already there. The doctor was extremely helpful and appreciative of the information that I had. He agreed to wait until we arrived with the copies of the reports and scans before anything further was done.

 When we arrived at the hospital, it was very obvious that the doctor, my daughter, and everyone involved were much more relaxed. After reading the reports and viewing the scans, they released her from the hospital and told her to follow up with her regular doctor if there was any change in her condition.

 If I never need this level of medical information for myself or my family again, this one experience has shown me how important it can be.

 In an accident, there is always the possibility that the injured may not be able to communicate with anyone. We really do need, at the minimum, the ability to alert medical personnel when someone has VHL.

As printed in the VHL Family Forum 19:1, January/February 2011. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

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