Devastating news...
We received the official radiology report. To sum it up...Sophie is not a surgical candidate because both hemispheres are abnormal.
Here's the e-mail I received from Dr. Chugani -
...I have all the reports now, basically we are seeing abnormalities from both sides of the brain, but worse on the left. Nevertheless, because of bilateral epileptic discharges, surgery is not recommended...
Here's part of the radiology report -
...FINDINGS: The EEG performed during the PET scan showed frequent spike wave activity on both the left and right sides. There was no consistent lateralization of interietal discharges. The PET scan showed decreased glucose metabolism involving mostly the left parietal, occipital, and possibly temporal cortex. On planes 24 and 25, it appears that the left frontal cortex may also be hypometabolic. On planes 26, 27, and 28, the left medial temporal lobe structures also show hypometabolism. In the right hemisphere, parietal cortex hypometabolism is seen on planes 13 and 14. The basal ganglia appears symmetric. There is thalamic asymmetry with lower metabolism on the left compared to the right. The brainstem and cerebellum appeared normal...
So there it is. I did not realize that I would be this sad to hear that Sophie would not have the option of brain surgery. It just hit me - this is something we will be battling for a long time. I thought, we will try different medications to try to get the seizures under control and if we exhaust all other options then we could turn to surgery. No longer an option. Please do not bring this up if you talk with me because I am just trying to hold on. I am trying not to think about it too much.
We received the official radiology report. To sum it up...Sophie is not a surgical candidate because both hemispheres are abnormal.
Here's the e-mail I received from Dr. Chugani -
...I have all the reports now, basically we are seeing abnormalities from both sides of the brain, but worse on the left. Nevertheless, because of bilateral epileptic discharges, surgery is not recommended...
Here's part of the radiology report -
...FINDINGS: The EEG performed during the PET scan showed frequent spike wave activity on both the left and right sides. There was no consistent lateralization of interietal discharges. The PET scan showed decreased glucose metabolism involving mostly the left parietal, occipital, and possibly temporal cortex. On planes 24 and 25, it appears that the left frontal cortex may also be hypometabolic. On planes 26, 27, and 28, the left medial temporal lobe structures also show hypometabolism. In the right hemisphere, parietal cortex hypometabolism is seen on planes 13 and 14. The basal ganglia appears symmetric. There is thalamic asymmetry with lower metabolism on the left compared to the right. The brainstem and cerebellum appeared normal...
So there it is. I did not realize that I would be this sad to hear that Sophie would not have the option of brain surgery. It just hit me - this is something we will be battling for a long time. I thought, we will try different medications to try to get the seizures under control and if we exhaust all other options then we could turn to surgery. No longer an option. Please do not bring this up if you talk with me because I am just trying to hold on. I am trying not to think about it too much.
2 comments:
Dear Elaine,
Please know that my thoughts are with you since you got this news.
We, too, have a child with endless seizures, and have also wanted that hope of surgery...
...only to have our dreams dashed as well.
You have every right to feel devastated, because I know how you feel, and I'M devastated about it too.
Our prayer is that perhaps they'll find a way to find a focal point (even if it IS bilateral) with some new technology in the future.
Hang in there.....for Sophie's sake. :)
Our hearts ache for you.
Love,
Barb
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