What to do with a grade I glioma? Doctors unclear.

Posted by valgame @valgame, Sep 11, 2017

Hi... im a new member! Im 29 , and im from Mexico... Im very nervous and confused with all the information that Doctors are given to me.. I started almost 2 months ago with a terrible headache.. At 10th August i cant stand anymore and I end at Intensive Care Unit at hospital. It was my first time at a hospital. Doctor said it was an ictus (cerebral stroke) , they made a lot of tests : blood, IRM, IRM with contrast, PET/TC, and some more. After 11 days they put me out and said that it wasnt an ICTUS, they were very sure it is a glioma and they suggested me to do a surgery to remove it. I have seen 5 Doctors since then, and even when my PET/TC is negative they said that a surgery is needed. Im very affraid, because diagnosis was so confused and tests dont give background for it. Even some of theme told me that they cant be 100% sure of a glioma but due of the image at the IRM they assume it. Right now, im Ok... just headache and i think i can hold on.. All my functions are Ok: speak, hear, movements, view. The glioma is on my right temporal lobe and im left hand. For what I know i need another test to know if been left hand is not a problem due the glioma on the right side.
Im affraid to do a surgery if Im Ok, affraid to take a wrong decissiom with the wrong doctor and I dont feel safe taking a huge decission like this with any support on my analysis.. I dont have resources to go to MayoClinic.. im doing my best to go to MexicoCity but even there, Doctors are not very clear. Im affraid to be just someome who pays a surgery without need it. Somebody was in this kind of situation? What do you recommend? Thanks a lot

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Scott, Volunteer Mentor | @IndianaScott | Sep 11, 2017

Hello @valgame I am Scott and it is nice to meet you. I am sorry to learn of your current health concerns. Not knowing and waiting is often a very difficult part of an illness for sure!

My wife had a glioma found due to her severe headaches and other symptoms (audio, olfactory, and visual hallucinations). Her tumor was discovered by a neurologist in Chicago who said the same thing -- they could not tell if it was benign or not, etc. So she went to Mayo Clinic in Rochester, Minnesota for a stereotactic biopsy. The doctors told us at that time (this was about 15 years ago now) this was the only way to know what it is. She made the decision to have the biopsy as she said she could not manage to continue without knowing what was going on in her head. She had Dr. Frederick Meyer do the surgery as he had done so many of them.

Her tumor was in her right frontal cortex and she was left handed as well.

Peace, strength, and courage!

jkenser | @jkenser | Sep 15, 2017

I am sorry to hear of your recent health changes. I too had a tumor in my right temporal lobe. I had it successfully removed 8 months ago at the Mayo clinic in Rochester. I ended up having half of the lobe removed. If you move forward with surgery you should definitely have it done at Mayo. I know how scary this can be and am here if you need to talk to someone. I will message you my phone number. You can call me anytime =)