Brain Tumor Support Group

10ACGIRL · Sep 1, 2008

Hey, guys!
I'm wanting to start a brain tumor support group near Sugar Hill/Suwanee/Buford area...I'm also a hopeful nursing student, but I'm a recent brain tumor patient as well. I tried placing an ad on craigslist, but you can only imagine the weird responses I got. Thanks!:)

hat U mean. I am a brain tumor survivor myself. My surgery was in 95.

topgungirl27 · Sep 1, 2008

Awesome!! How are you doing? Been through Macon several times, my husband is from S. GA, so we always pass through there. Can you share what type of tumor you had and the after effects? I still haven't had any luck getting a group together up here either.

10ACGIRL · Sep 1, 2008

I had been seizure free 14 years. It was a Porencephalic Cyst on the right temperal lobe, a horse shoe cut from my temple all around to the lower back part of the ear. It wass the size of a Naval orange. I was born with mine as result grom a stroke while in utero. I had my 1st seizure at 3 and my last at 27. It was malignat and did not need radiation. I was in ICU 9 days. BUT........here lately, I have been what Walt (hubby) calls is episodes of waking up out of my sleep and moaning and Iend up with aKILLER migraine that last up to 6 hours only to return to a migraine the folowing night. My Dr. says it's not seizures and that it isn't growing back. I stiill drive and nothing like that EVER happends when I am behind the wheel. I belive its because my brain knows the funtion that it has to do in order for me to drive and thats why nothing happends I guess. We live right off 475 in Lake Wildwood on Zebulon Road on a lake with a dock across from the neighborhood beach.

topgungirl27 · Sep 2, 2008

Oh, wow...I have never heard of that type of tumor...of course, I'm learning now that there are a ton of diff. types. I had a menigioma the size of an orange on the right side between the sensory and motor cortex...learning more and more about this now too. I had about 3 weeks of numbness on my entire left side but it was only happening at night, so my hubby and i just thought it was the mattress...silly. The numbness stuck around one day at work and i began to slur my words and became very wobbly..tripping and falling into things. Went to a family dr. who said it wasn't just migraines, he set me up for an MRi 2 days later and that's when I found out. Had surgery the following week! Stayed home about 3 months and returned to work mid May...had all the tests for seizure activity..had never had one even after returning to work in May. Had my first GM seizure in June this year...another one in July and just again in August..i'm not on Dilantin and Keppra...still no energy and wondering if i should have gotten a second opinion?