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oligodendroglioma grade 2- how do you hold down a job with seizures.

bigshowjc's picture
bigshowjc
Posts: 1
Joined: Aug 2014

Hello my name is Jeff and I have Oligodendroglioma grade 2 that i was diagnosed with in august 2011.  I didn't have any symptoms at all before having a seizure at work. I was taken to the hospitol and they did a biopsy and that is how they found the type of cancer. I went back to work 2 weeks later. I had a bum foot after that. I tought myself how to walk by making my own foot support brace and eventually, I didn't need it anymore. I would still have what I called my leg going out but now I know it was focal seizures I think it is called. Then in December of 2013 I had anoter big seizure, not a grandmal because i never went unconsious. I went to the ER and they put me on medication, Keepra, Dylanton and have what I feel been experimenting on me. I have full right side of my body sizures everyday, I am on a high dose of Keepre, Dylanton, Vimpat and just started another medication for anxiety, I can't remember the name right off. As for my tumor, I don't have any memory loss or any issues other than the seizures. My question is, how does a person work and provide for their children with this and how long begore the seizures go away. I have been having the full right side of my body one's since about January of this year (2014). Is there any finacial support groups out there? I have no family other than my children so I have no one to help. I have depleted my retirement and am just about out of my savings. I made decent money for the area I live in last year so i don't qualify for any kind of assistance because they go off of last years income. I pay out of my own pocket, $800 a month in percriptions. Any advice is welcome, thank you

BenLenBo's picture
BenLenBo
Posts: 145
Joined: Feb 2012

Goodmorning Jeff,

    First I am sorry to hear you have been dx with Oli-Grade II tumor.  I was dx end of  August 2011,  I suffered a grand mal seizure, brought into

emergency and life flighted to to Fargo, ND.  Surgeons from Mayo flew into to remove tumor, have had no seizures or physical problems since

removal.  I had 6 weeks of Radiation, along with 6 weeks of Chemo (Temodar Oral), and then 6 months of increased dose of Temodar.  I am

cancer free and living a normal life.

     First, I wonder why your Neuro- has not removed your tumor- this tumor has fingers that can spread to the other side of the brain - very

dangerous.  Seizures are coming from the tumor spreading within your brain.  Second opinions are helpful in treating this kind of tumor, ask

questions like, HOW MANY PATIENTS HAVE YOU TREATED WITH THIS TYPE OF TUMOR?  COURSE OF TREATMENT USED?  SUCCESS RATE? .  Keep

asking questions until you hear what makes you comfortable- your goal is LIFE.  Being you have small children- you want to be there for them.

   Now, first thing, being you are unable to work- apply for assistance Social Services  in your county or ask at the hospital or clinic what paper work you need to fill

out for help in housing, medical , food, child care , whatever your needs are.  This is immediate help!  Then apply for Disability/SSI - having a brain tumor, you will

automatically be accepted and should have filled out those papers when you were first diagnoised in the hospital.   This is a lot of paperwork, and there are

advocates in the hospital and clinics that will help fill these forms out.   Social Services goes back only 3 to 6 months, if your income is below guidelines, you will

receive assistance...  Disability/SSI is on the amount you have earned in 6 months or if you are unable to work.

     Finding the right medical facility is well worth your time and life.  We have Roger Maris Cancer Center in Fargo,ND, Mayo in Rochester, MN and John Hopkins in

Baltimore, MD.  Check the facilites out in your area and what can be offered - shop for your care!   

      Best of luck, and remember to FIGHT-FIGHT-FIGHT!

 

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