Re: glioma treatment options

Posted By amy on February 23, 1999 at 09:26:48:

In Reply to: glioma treatment options posted by CCF Neuro[P] MD, RPS on February 18, 1999 at 15:45:05:






: You have been so helpful in the past and any imput you have would certainly be appreciated.  I have been diagnosed with a low grade glioma and that was verified with a stereotactic biopsy.  My real reason for even having the biopsy done (long story) was to get a more detailed answer-what type of low grade gloma? An astrocytoma, etc?  This tumor is in the left temporal lobe, 5x5x4cm.  This was found when I had a seizure 5 months ago-no other health problems.  I am on dilantin, no other seizures.  I am basically feeling fine.  I have read several reports on the low grade gliomas and there seems to be some controversary over resecting or not.  What is your opinoin?  Do you have any low grade glioma patients that chose basically no treatment?  How did this compare with the radiation or resection option? I have my MRI reports and pathology reports if that helps.  Do you do any phone consultation?
This is a very helpful forum.  Everyone may not put it in their entry, but you all should know, this is so appreciated.  Thank you.
  


: :  Please help me - I need more info. as to how they "verified" your low grade glioma.  I have been living with a mass which they found on MRI in 11/97 and has been called everything from a low grade glioma to a birth mark to a lesion.  I am now in the process of consulting with various surgeons about different options.  If you cannot post an answer here please send me an E-mail at ***@****.  P.S.  I wholeheartedly agree, this is a very helpful forum.!!!!!





Dear Amy:
Sorry to hear about your tumor.  Actually, there is no such thing as a brain birth mark.  Most of the time, a biopsy is needed to verify the diagnosis of astrocytoma, oligodendroglioma, etc.  It does sound like it is slow growing as you have been diagnosed with a mass since 1997.  I hope that you find you answer soon.
Sincerely,
CCF Neuro[P] MD




Doctor:
Thank you for your reply.  I would like to explore this a little further if you don't mind. My "tumor" was originally detected on MRI 11/30/97.  The reason for having the MRI done in the first place was a severe seizure and confirmation of prior epileptic activity for approximately 8 years which before then had been misdiagnosed.
Anyway, the epilepsy was under control with a small dose of depakote and I was basically content to live with this thing in my head, having periodic MRIs to monitor any change in the mass.  We were told there was none.  I experienced a dramatic change in seizure
activity the week of 12/26/98 - 1/2/99.  My neurologist instructed me to take additional medication, that didn't work, then a little more, still no change in seizure activity, in fact they were getting worse.  I was hospitalized on 1/7, and after a series of tests turned up nothing, except the obvious, which was that a
ton of abnormal activity was going on in my brain, all pointing toward the mass in my right temporal lobe.  They discharged me a week later with not much of a game plan except to take massive doses of neurontin (on top of the 1000 mg of depakote which my neurologist had me up to) and to see how I tolerated that before we
seriously discuss the surgical options.  Well, 2700 mg of neurontin and 1000 mg of depakote are not enough to keep the seizure activity under control, but it is plenty to make me feel totally incapacitated.  So, now that I have given you more than a brief synopsis of my case, I was wondering who I should contact at your
facility for what will be my third surgical opinion.  I meet with one, here in Columbus, on Wednesday (2/24) and another on March 1.  I read a posting from 1/98 which referred to a Dr. William Bingaman, and it gave his phone # as 216-444-5672.  Is he still on staff there? Would he still be the doc to contact at your facility?
Is this still his office #?   Let me know if there is someone else.
Thank you,
Amy