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To The 18 People Who List Corpus Callosotomy As A Treatment: Can You Please Share Your Experience With This Surgery?

To The 18 People Who List Corpus Callosotomy As A Treatment: Can You Please Share Your Experience With This Surgery?

I am new to this network and I see where 18 of 20276 people who include corpus callosotomy (CC) in their treatment. I would love to learn about anyone's experience with CC surgery. It has been recommended for my 14 yo son who has drug-resistant/refractory myoclonic astatic epilepsy (MAE or Doose Syndrome) since age 4. His seizures, which are generalized, have worsened significantly with the onset of puberty. The thought of major brain surgery and the potential side effects scare the heck out… read more

A MyEpilepsyTeam Member said:

I'm assuming they have done EEG/vEEG or similar testings to detect the brain activity? Have you asked if there are any other options before splitting the electrical activity between the two hemispheres? Often they want to wait until a patient is older (closer to 20) and the body is finished done growing.

posted about 6 years ago
A MyEpilepsyTeam Member said:

Age is not a factor. My son just had a corpus callosotomy and he's only 2 years old.

posted over 2 years ago
A MyEpilepsyTeam Member said:

Hi Vulpix, thanks for the note. One of the challenges has been finding outcome data on kiddos like my son. Many cases involve younger kids who may not be mobile or verbal, but my son is higher functioning- both verbal and mobile with an IQ ~70. If his seizures were under better control, the team thinks he would test higher. He would gladly undergo the procedure, but I don't know that he (or my husband) grasp the potential risks. The docs think younger kid's brains adapt better post-surgery, because their brains and bodies are still developing.

posted about 6 years ago
A MyEpilepsyTeam Member said:

My mom, doctors and I spoke about brain surgery before, they had said I was too young for it at the time. I'm old enough now, but it's more risky since my seizures have changed. I'm not a mom, but I think he's too young for it.

posted about 6 years ago
A MyEpilepsyTeam Member said:

Yes- various testing done including EEG/vEEG, PET-EEG to rule out focal activity and to confirm generalized activity. We're waiting for a second opinion from another center and inquiring what other options there might be.

posted about 6 years ago
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