Medications or surgery

[Julie Palmour]

Bless you all.  I have posted before, about 18 mths. ago.  My daughter has a 2.5 yr. hx of seizures with an onset of encephalitis and chronic mono.  She had one seizure a year 1997, 1998 and since March of 1999 has had increasing seizures even on medication.  She was seen at NYU and diagnosed with left temporal lobe seizure disorder.  Her MRI is normal but the Video EEG did show spiking and slowing during sleep, off medication.  She had a major seizure while there.  Since (Oct. 99)she has had three episodes.  One generalized and lasted 14 mins.  The last two (within two weeks of each other) lasted only 2-3 mins and did not generalize.  She is on 700 mg./day Tegretol XR.  She has "visual flashes" about every other day.  Prior to her last seizure she had two (visual flashes) in a row then the episode.  I will admit that I have a bigger problem with all of this than she.  What would you recommned at this point?  She has gained alot of weight on the Tegretol.  Once before she was on it and gained weight also.  As soon as we took her off (she was seizure free for 6 mths.) she lost weight back to normal.  Also, she seems to have these episodes in conjunction with sinus infections.  Any ideas?  Is she at all a candidate for surgery?  The idea of being free of all of this appeals to both of us.  She is 11 years old next month. Thanks so much.

[CCF Neuro[P] MD, RPS]

Dear Julie:

I think I would be careful.  There is less efficacous outcome (not as good) when there is no MRI focal finding.  What did the PET scan show?  If the PET scan and EEG are indicating a lesion in the same area then the outcome would be more favorable.  But strictly based on EEG, the outcome may not be favorable.  Push to have the PET scan done.  In addition, what is her language usage on the side of the brain?  What did the WADA show?  I would not go into sugery unless all the eggs lined up and you knew there was a focal lesion, language would be minimally affected, etc.

Sincerely,

CCF Neuro MD

[Julie]

Thanks for the reply.  I needed to be more specific.  There has never been any indication of any lesion.  No one has ever mentioned a lesion.  They tell me it is a "neural discharge" ???? They were able to see the location or focus of the seizure on the video EEG.  Isn't that just the starting point.  Does there have to be a lesion or can't it just be a "weak" point in the brain.  Her language doesn't seem affected to the lay person but she had Neuro Psych  tests at NYU which showed deficits in visual memory and some naming activities, however, they did the tests the day they checked her in (all the hoopla and activity surrounding getting hooked up to the EEG and following a long trip there) and finished them up the morning after she woke up from 16 hours of being out of it following the major seizure.(She had too much Atavan? and it knocked her out.  I have a Ph.D. in education and I don't really see much.  She stumbles sometimes to retrieve words.  When we study for spelling tests she may say "e" instead of "h" and she will say, "I knew it was e but I said h."  Really kind of minor stuff there.  My main concern is that she is having all of these breakthrough seizures with visual flashes and sometimes a focused seizure.  It doesn't seem to matter how much meds she's on, she still has these.  I understand your point about there being little assurance unless you can confirm a lesion.  What about the stimulator?  Can you tell I'm feeling desparate?  I have alot of faith in our doctors but so value what you all have to say.  You were "right on the money" with the temporal lobe thing when all the family doctors kept saying it was her mono causing the seizures.  Well, what do you think now?  I'll anxiously await your response. Thank you so much!!

[CCF Neuro[P] MD, RPS]

Dear Julie:

Without a lesion detected on MRI and/or PET, I would not send any patient to surgery!  That is my bias, but we have only approximately a 30% rate of seizure freedom from surgery based on normal MRI and/or PET with a 75% seizure-free rate with a detected lesion. The neuropsych testing should be confirmed with the WADA test.  Frankly, this sounds alittle shaky at best, currently.  I think the workup needs to be properly done and all the options considered.  The vagal nerve stimulator reduces sezure frequency but only cures seizures in a very small number of patients.  Medications should be tried and pushed until the full surgery workup has been done properly.

Sincerely,

CCF Neuro MD

[ELLYEN RODRIGUEZ]

I HAVE ARNOLD CHIARY TYPE 1 SYRINX AND SYRINGOMIELIA I HAVE A QUESTION HAVE I A SURGERY OR NOT BECAUSE I FEEL BAD I HAVE HEADACHE,MY LEFT ARM HAVE PAIN AND MY NECK TOO. WHAT IS THE PROVABILITY THAT IN THE SURGERY STAY GOOD , WHAT IS THE PORCENT OF EVERYTHIN IS GOOD OR BAD.

[CCF Neuro[P] MD, RPS]

Dear Ellyen Rodgriguez:

Sorry to hear about your Chiari I.  It is difficult to answer your question.  I would have to defer to your neurologist/neurosurgeon as he/she has done the neurological examination and has visualized the MRI.

Sorry, I am not much help.

CCF Neuro MD

[Julie]

Referring to my original question and subsequent reply, my daughter was changed to Carbatrol about three weeks ago. Almost immediately the "visual flashes" she was having stopped and absolutely no seizure activity.  Then wham, today she had 13 of the flashes.  That has NEVER happened.  What is causing this?  We went to have blood levels drawn today and everything was o.k. Her levels for the meds was just "perfect" according to the doctor.  She said that these were likely aura's but the meds were keeping them from becomming full blown seizures.  What do you think?  We were so hopeful with the new medication and now feel very cautious!!  Thanks for your help.

[CCF Neuro[P] MD, RPS]

Dear Julie:

It is difficult for me to tell you for sure, I know so little about your daughter and haven't seen the EEG or noted the detailed history.  Yes, it might be an aura without progression to the full blown seizure activity.  Usually visual flashes are not temporal lobe but occipital lobe.  But, it might be that the initial activity in the temporal lobe is spreading to the occipital lobe or visa versa.  At this point it might be a wait and see attitude as far as how many of these visual occurrances happen and then decide on medication.

CCF Neuro MD