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Comment by Jennifer Kincaid on July 24, 2012 at 10:04am

Hi everyone.  My son, Jackson, had his tumor resection this past Thursday, July 19th.  The doctors were amazing.  The procedure took about 4 1/2 hours to complete.  He spent a little over 24 hours in the pediatric ICU and then then almost 48 hours in the regular pediatric wing.  We are home now and he is doing remarkably well.  We are so blessed that he seems to have no impairment of any kind as a result of the surgery.  He is on Keppra as a precautionary treatment, but very low dose, and we think it is only temporary as long as he does not show seizure activity.  Post-op and staple removal is scheduled for the 30th.  Thank you all for your insights, input, and support through our journey of deciding on treatment and leading up to the surgery.  This site is a wonderful resource and refuge.  So happy to have found it and you all. 

Comment by Beth Rosenthal on July 5, 2012 at 11:06pm

Hi ladies. I'm glad you're making use of this forum. My mom was all alone during my 2 operations and radiation treatment. My parents were divorced and my dad was there, but not like my mom. And he was remarried. Actually, most of my family is still on my s*#t list. So it's really nice seeing you connect. I feel like it's a gift for my mom. I love her so much; more than anything. Let me know if you or your children need something. I'd like to help them. I would have loved some 16 year old girl to talk with about all this.

Comment by Jennifer Kincaid on July 5, 2012 at 9:19pm

My 12 year old son was diagnosed with a tumor in the anterior medial portion of his right temporal lobe at the beginning of April.  We found it as a result of an MRI done after going to the doctor about odd headaches. He described the headaches as shocks of pain, though not electrical, coming in pulses sometimes with dizziness and once with funny vision. They came in waves of varying pain levels.  I knew they weren't like normal headaches and he has never had a lot of headaches, so I made a pediatrician appointment.  Given family history of aneurysms, our pediatrician ordered the MRI as a safeguard and they found the tumor.  All tests (neuro exams, EEG) have come back showing no impairment as the result of the tumor. Two doctors  have classified the headaches as migraines probably not related to the tumor at all.  They feel it's just a coincidence that we found the tumor because of the migraines.  No biopsy has been done and they say from looking at the MRI that the tumor looks "low grade and slow growing" (benign???).  They also say it's something that could have been there for a while.  He still has slight migraines that can be controlled by Motrin, but those have all but stopped since school ended. Again, they can't even say conclusively that the tumor and migraines are related.

We have decided to go the route of surgery, which we had scheduled for the 12th of July.  Now another specialist has been consulted and will likely be the one to operate given that he is much more experienced in this type of surgery.  That is a good thing, but the thought of having to change the date again is so frustrating.  We are keeping our fingers crossed that it will be as close to the 12th as possible since we are now looking at recovery time as it will relate to going back to school at the end of August!  

I'm very thankful for this site as a resource and as a place to find others who understand.  I look forward to getting to know all of you as we continue on this journey.

Comment by Margaret J on June 11, 2012 at 10:12pm

My son had an epidermoid tumor removed from left frontal lobe  at 22 yrs old. It has caused alot of depression.   He's tried different meds but they had really bad side effects.   Has anyone had any hormone testing   with any help?

Comment by Lisa hemberger on February 29, 2012 at 11:59pm

Hi, I am new to this site. Sitting here at the children's hospital of Philadelphia where my 13 year old daughter just got admitted for headaches. She had a trigeminal schwannoma removed in 2008. She still has severe headaches that they don't know why and can't find a med to help!

Comment by Jenny Bagwell on April 5, 2011 at 8:58pm

Hi Penny..what kind of tumor does your don have?

Comment by Penny Harrison on April 5, 2011 at 8:16pm

I am actually a grandPARENT and my grandson is older than some of these children.  He was diagnosed and operated on at 19. 

Comment by Jenny Bagwell on February 10, 2011 at 11:52pm

my son has a tectal glioma please visit his site at caringbridge.org/visit/noahbagwell