Morning Medical Update Monday 11-11-24

Media Resources

Jill Chadwick

News Director

Office: (913) 588-5013

Cell: (913) 223-3974

Email

jchadwick@kumc.edu

Kansas City, Kan- Key points from today’s guests:

Rebha Chalise, lives with RNS implant for epilepsy

  • As a college student, she suffered a brain infection that was initially misdiagnosed as a stroke in Oklahoma.
  • The neuro team at The University of Kansas Health System diagnosed her with NMDA encephalitis, an auto-immune disease that causes severe seizures and can limit her independence.
  • After a decade of rehabilitation, a responsive neurostimulator implanted in her brain improved her condition, enabling her to work and live more independently.
  • She doesn’t really remember the symptoms because this affected her memory, but she feels her head go numb and start tingling.
  • With the implant, she is able to get back to doing many things independently that she could not do before, and she has seen improvements in other areas that impacted her before.

Archana Chalise, Rebha’s mother

  • When she was first diagnosed, she said they didn’t know what the outcome would be with her treatment.
  • They noticed differences in her sleep patterns and personality before the implant.
  • They have seen improvements in memory and sleep patterns after the procedure.

Robin Chalise, Rebha’s father

  • After this brain injury, Rebha was in the coma for several months. Then she had to re-learn how to read, eat, walk, and do other activities.
  • Being a very strong girl, her internal motivation led her back to do a lot of things today, independently -- and she's still doing it more and more every day.
  • He is encouraged that they are seeing she is more alert and more engaged in conversations and has improvement in memory.
  • He praised the doctors and staff for treating the whole family well during this process.

Dr. Murtaza Khan, epileptologist & neuroimmunologist, The University of Kansas Health System

  • This disease is called “brain on fire disease” – the brain is literally undergoing inflammation.
  • There is a firestorm of symptoms including insomnia, memory loss, delusions, hallucinations, and seizures.
  • This isn’t epilepsy, but it causes epilepsy.
  • Time is brain, so the earlier this is caught and the earlier you get the underlying symptoms under control, the less damage to the brain you have.
  • It is difficult to diagnose, but with early identification and treatment, patients do really well.
  • We thank the Chalise family for sharing their story so it might be able to help others.

Dr. Carol Ulloa, epileptologist; director, Comprehensive Epilepsy Center, The University of Kansas Health System

  • Autoimmune diseases affecting the brain inexplicably affect young females more than any other group.
  • For this particular type of autoimmune disease that attacks the brain, this is about one in 1.5 billion.
  • The area that had permanent damage from the encephalitis was a region in the temporal lobes called the hippocampus. There was inflammation there initially and then that led to scarring and that part of the brain impacts memory. That's why her memory is significantly affected.
  • The brain implant is part of neuromodulation. There was a lead implanted in the right hippocampus and one in the left hippocampus, and basically, the electrodes that are implanted record the brain activity, and then when they sense the very beginning of a seizure, they send an electrical impulse that can help stop the seizure before symptoms happen.
  • If you're having seizures despite taking medications, don't give up. Seek a second opinion or a third opinion. Make sure that you are going to a Comprehensive Epilepsy Center where you're seeing a sub specialist because that's the place where you will get the most information, see what your treatment options are, and understand the risks and the benefits of all those options.

Tuesday, Nov. 12 at 8 a.m. is the next Morning Medical Update. Hear from one woman who is learning to live like a survivor of breast cancer.

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