Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
? low grade glioma
Sat, 11/03/2007 - 10:12Topic: Surgery and Devices
I have been possibly diagnosed with a low grad glioma but cannot get an accurate diagnosis due to the poor location of the 1.5 cm lesion in the left occipital lobe. I started having seizures and have been having problems with speech at times. I am an RN and have been put on temp disability until I am ajusted to my new seizure medications. I am scared and want to know what is going on. I want to go ahead and have the biopsy along with its risks in order to have an accurate diagnosis, my doctor feels that the wait every three months for a MRI is the best approach. Is it better to wait until it is malignant or just to know now and do something while it is small? My neurologist wants me to have a second opionion at Johns Hopkins Hospital in their neurology dept. He cannot come up with any other explainations about what else it can be. Sorry so long. Hope to hear what you have to say or any advice. Alana
Re: ? low grade glioma
Submitted by EarthMonkey on Sun, 2007-11-04 - 15:58
I had a ganglia glioma tumor removed twelve years ago. If it has not been cut out of your head a nuerosurgeon or nuerologist probably would not be able to give you an exact diagnosis. Mine was called a lesion until after it was out of my head. I was told that this was because they thought it to be a tumor but it was not for sure until after a biopsy. One forwarning I would give you is that if it is a a gangliaglioma tumor it will cause your seizures to steadily become more and more severe (that is one of the reasons they thought that was what it was). There will be no control. I understand a lot of tumors do that whether they are benign or not. Gangliagliomas are not malignant but at the end I was in status weekly and having up to hundreds of seizures a day. It progressed from a seizure every few months to that over ten years. I would definitly follow your Drs advice to go to John Hopkins. He is trying to assist you to the best of his ability by giving that recommendation. In my understanding Glioma tumors do not necessarily turn malignant either they start malignant and stay that way or they start benign and stay that way most of the time. But benign does not mean good for you it just means not cancerous. My guess is they will not just do a biopsy, they will either remove it and be done or leave it and do neither. Any brain surgery is a headache to say the least. Even when they are putting electrodes on the outside of the protective layers inside the skull it hurts and takes weeks to heal. They have to cut through your skull and lots of muscles no matter what they do. I would ask why wait three months. If you don't understand ask the same question again and again eventually the Dr will figure out you are not understanding how he/she is answering. I would ask about simply removing the tumor and being done. Ask the pros and cons of doing a biopsy. What would be the effects of the surgery. Worst and best and in between. Which is worse seizures or the end result. Ask the likelyhood of serious kindling problems like what I went through. Ask about the newer types of surgery like gamma ray or something like that. I would ask what else it could be, could it be scar tissue or something like that? Ask if it is possible to do the surgery? I would ask the effect of your age on the surgery? I would ask what testing would need to be done before surgery?