October 17, 2013, 6:49 pm
Because of federal law and out of respect for patient privacy, OHSU generally does not comment on a patient’s care. However, in this case, Emese Dunai has recently given us written permission to discuss her treatment with the media.
Physicians in the OHSU Neurology Department have been seeing and treating Ms. Dunai during the past year.
She has secondary dystonia as a result of a scuba diving accident several years ago. Secondary dystonia is a motor control disorder characterized by overcontraction of muscles in the body.
After more conventional treatments were of limited help in Ms. Dunai's case, OHSU neurologists and neurosurgeons began considering whether a special type of Deep Brain Stimulation could be helpful for Ms. Dunai. But OHSU learned that Ms. Dunai's insurance company considered the procedure "non-standard" and would not pay for the procedure.
Over the last few months, OHSU has pursued an option for an experimental protocol for Ms. Dunai at another institution. That experimental protocol might help fund her treatment and might help her dystonia.
We have been in contact with that institution's officials and continued to communicate with them on Tuesday of this week, and again yesterday. The institution has made no determination yet as to whether Ms. Dunai can participate in that protocol.
We are very concerned about Ms. Dunai's condition, have continued to work with her to try to treat her condition and have worked diligently during the last few months to pursue all options that might help her.