Questions posted in the
Neurology and Neurosurgery Forum have been answered by doctors from The Cleveland Clinic Foundation.
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Subject: Re: Epilepsy Surgery
: My 8 yr. old son was diagnosed with a low grade glioma in the left temporal lobe 4 yrs. ago. The tumor was resected. He did not have chemo or rad. He has continued to have seizures and is now on a low dose of tegretol and Higher dose of Neurontin. He just completed and evaluation for possible seizure surgery. The PET scan revealed there is tumor still present but its not doing a whole lot. He also seemed to pass the Wada test although he had a bad reaction because he was given the adult dose. I'm not totally comfortable with the findings because of this fact. Anyway, The doctors then came back after epilepsy conf. and decided he should pursue meds. more aggressively for about another year. I am not happy with this decision for these reasons: My son has had behavior problems since this diagnosis. He behaves on around a 5 year level emotionally. It has been hard for him to have friends his own age because of this. He is doing well in his special class at school but has a hard time in real life. I also feel I have a very short window left with him because I am concerned that once he hits adolesence we will have a harder time managing his meds. also thoughts of driver's license, holding down jobs, etc.. I also am not sure this tumor is just going to keep sitting there. How much longer before it grows significant enough to pursue. I feel I actually have a chance with surgery and some time left to give him the therepy he needs to get through this before our influence gets clouded by his teenage quest for himself. My question is What do you think about these concerns? What can I do about them? I do have a second opinion coming from UNC-Chapel Hill. But how do I know which hospitals might be more "surgery " oriented, and how do I know which one would be best for our son's situation-one that specializes in care for children? I know that epilepsy surgery in children is fairly new but I truly see it as a viable option for my son. I would greatly appreciate a response. Thank you. _______ Dear Ms. Huxter: The Cleveland Clinic Foundation is one of the most active epilepsy surgery programs in the world right now and has one of the strongest track records in both basic science research, clinical epilepsy and surgical management of these disorders. Research has shown that in cases of lesional epilepsy (that is when there is a lesion within the brain causing abnormal electrical activity which results in seizures) total resection of the lesion will result in the highest chances of providing a seizure free outcome (with or without anti-epileptic medication). As you may or may not be aware of, his behavioral problems are most likely a result of his brain tumor/epilepsy. Complete resection of low grade gliomas combined with the appropriate adjuvant therapy (chemo and/or radiation) will result in a cure. In a minority of cases subtotal resection may lead to progression of the tumor to a more serious type of tumor. I can not tell whether that is or will be the case of your son without having all the pertinent details available. Total resection of low grade tumors depends on the location of the tumor and the safety of resecting such tumors. That is, one must weigh the risks versus the benefits of such an operation. I agree that your concerns are very legitimate and that you should continue to seek a second and even a third opinion if necessary. If you are able to come to Cleveland, you may wish to contact the office of Dr. William Bingaman (Section of epilepsy surgery) at 216-444-5672 for an opinion. Alternatively, you could contact the office of Dr. Elaine Wylie (section of pediatric epilepsy disorders) at 216-444-0083. If you have any other questions please do to hesitate to write back. Good Luck !
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