This month of (May) is Brain Tumor_Awareness/Action, along with many other medical conditions. Four years ago my life completely changed because I was diagnosed with a rare brain tumor known as Lhermitte-Duclos disease (LDD), also known as dysplastic cerebellar gangliocytoma. Along with being angry, I also felt lost because I was a junior in college and I just turned 21 years old and now I had to deal with another major medical condition. After going through brain surgery last year and many more challenges, I have found a joy in this struggle/hard time in my life. That’s because I get to share my story, educate others about my rare brain tumor and connect with others that are dealing with similar situations.
I wanted to write this post to honor people that have lost their lives to brain tumors, people that are still fighting and survivors.
According to the National Brain Tumor Society’s website, there are nearly 700,000 people in the United States are living with a primary brain tumor, and approximately 78,000 more will be diagnosed in 2016.
QUICK BRAIN TUMOR FACTS from National Brain Tumor Society
- 688,096 Americans are living with a brain tumor
- 550,042 tumors are benign
- 138,054 tumors are malignant
- An estimated 77,670 people will receive primary brain tumor diagnosed in 2016
- 52,880 will be benign
- 4,790 will be malignant
- The average survival rate for all malignant brain tumor patients is only 34.4%
- Male: 31.7%
- Female: 34.4%
For the most common form of primary malignant brain tumors, glioblastoma multiforme, the five-year relative survival rate is only 5.1%
An estimated 16,616 people will die from malignant brain tumors (brain cancer) in 2016
Faces of Brain Tumors. (Photos should be up soon on my facebook page Keely Creative) Please check back later for an update.
Photography is done by from two weeks ago for the American Brain Tumor Association 5k walk/run. Please check them out of you or a family member was just diagnosed with a brain tumor. They have a lot of information, research and support groups (in-person/personal).
Today I’m going to talk about, epilepsy. After my brain surgery on (February 23, 2015) I experienced my very first seizure. From what I’ve been told and what I can personally remember. It happened about a week after getting out of the hospital. I was back in the hospital because I had a bacterial infection. My first seizure happened around 11:30pm and the only reason that I remember this is because my alarm went off. That’s because I had to take my last dosage of antibiotics through my PICC line. Personally, my last thing I truly remember is cleaning (all the medical supplies) then plopping myself back onto the couch. Then I had a seizure and ended up falling off the couch and landing on my side. This was quite funny because when my mom called (911) to inform them that I had a seizure. They told her to turn me on my side and her response was “she already is, that’s how she fell”.
One of the reasons why I wanted to write a blog post about epilepsy is because it took me six months and three major seizure to final get diagnosed with generalized epilepsy. I’m definitely not blaming anyone for this because my case/medical history was quite complicated. Many of the doctors at the hospital where I had my brain surgery just thought my brain was healing and it will be something that will go away.
Then in December of 2015, I finally was able to see an amazing doctor that specializes in epilepsy. What makes her even more specialized, she only sees the woman. I was so excited and also nervous but I did know that I wanted answers. Before, that doctor’s appointment I ended up having a very short EEG to update the crazy brain activity. After talking to the doctor, my mom asked her about the EEG and she pulls it up on the computer and says “you have generalized epilepsy and this is why”. My mom and I were shocked/sad but also feeling happy because we finally got an answer. Before we had doctors say something like this, “we don’t know we have never seen seizures after this type of brain surgery you had”. One of the ways I like to describe it felt like I was being brushed off, like having seizures was no big deal.
Generalized epilepsy is genetic so it’s something you were born with. In my case, it was sleeping for 24 years. Then when I was on the antibiotics for the infection, that’s what woke up the generalized epilepsy/seizure activity.
What is Epilepsy? Epilepsy is a disease involving the brain that causes people to have multiple, unprovoked seizures. Seizures are a brief electrical “STORM” in the brain.
What happens in the brain? A person’s normal brain activity is disturbed. Then the brain cells begin to fire rapidly in an abnormal way. This type of activity changes how the body moves and functions.
Did you know, that 1 in every 28 people in the United States will suffer from epilepsy at home time in his/her lifetime? There are also emotional changes that happen for patients with epilepsy. About 23% report anxiety and also 24% of people report some type of mood disorder. Another big emotional change for people with epilepsy is depression. I want to be 100% honest with you, I’ve personally experienced these problems with both of these things.
Four years before being diagnosed with epilepsy, I saw a change in my mood and activity. I just thought it was me, I was stressing out about school/work and personal/family events were going on. Now, that I know there is a reason on why for these mood changes because I have generalized epilepsy. One of the ways that help me to calm that anxiety is working out. I’m not sure what it is but there’s something very calming about working out/yoga and lifting weights. I know the anxiety is always there and it will be something that I just have to work with. Just like the depression that pops up ever so often.
Last but not least, I do want to touch on one more topic and that’s seizure safety. There’s still a misunderstanding/old practices that if someone is having a seizure they will choke on their tongue so then you need to place something in their mouth. This is not true at all and one of the worst thing you can do for that person that’s having a seizure. I wanted to talk about this because it shocks me that there are so many people out there that don’t know any seizure safety or having a misunderstanding. Truthfully, before having seizures myself, I didn’t know much about the proper safety/seizures.
If you would like to know more information, you can go to the epilepsy foundation website. http://www.epilepsy.com/