Brain Tumour Survivor

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PostPosted: Wed Sep 07, 2011 12:43 pm 
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Hello!
To any and everyone who happens to come across this and reads it. My name is Kaylan and I am currently 27. When I was diagnosed with my oligodendroglioma it was back in June of 2008. So i was 24 at the time. It was found after a grand mal seizure which left me unconscious and laying on the bathroom floor of my place for about 6 hours. the even better part was I was curling my hair at the time, so when i went into my seizure I knocked that off the counter and rolled around on a hot curling iron for a while. So I had several very bad burns all over me. In fact, one of the burns was on my thumb and if it would've been a tiny bit more to the right then I surely would've lost my thumb! So, I guess you gotta look for the positive in every situation. Also, thank God, at the time I had a nosy neighbor who knew my schedule and she knew when I hadnt done anything all day long that something was wrong. She finally entered my house and that's when I finally woke up on the floor. I had bit my tongue pretty bad so there was dried blood all over my face and luckily she knew what had happened, so she forced me to get in her car and she rushed me to the E.R. all i wanted to do was sleep. Because of the nature of me being so young and that im from a small town, everyone in the E.R. thought that I was going through a drug overdose. When my tox screen came back negative, it was then they had to start looking elsewhere. (I, of course remember none of this due to seizure I was fading in and out of concsiousness.) When they did the CT they noticed a large shadow in my right frontal lobe. I was then rushed to the closest large city hospital that was equipped to handle my problem. After a MRI to get more detail, the doctor did a biopsy and from there it took roughly 2 months for the tumor to be identified. It was sent to Stanford then John Hopkins where they figured out what the hell it was! It was malignant Grade 2, which obviously isnt the worst but it isnt the best either. So I guess one has to look on the positve side of that also. NOT EASY!!! Once i consulted with my Oncologist, we found one of the best neurosurgeons in the state that specializes in the type of tumor I had. Went to a university to get it over with, but a complication did arise. When they opened me up and took my skull out it crumbled apart, so they had to put 7 metal plates in my head. The tumor was about the size of a baseball and there was much more swelling around that. I believe docs call that edema? Not sure. To be safe the doctor removed my entire right frontal lobe, so I was pretty slow for a while there and that was his hope by removing all the 'infected' area around the tumor would be to radically prevent any new growth. At that time, none of the doctors wanted me to do chemo or radiation because they wanted a last option if it were to ever come back more agressive. So I think I was very lucky not to have had to do any of those horrible treatment, but I never know what I may have to face in the future. If my family and I think back on it know. My neausea, vomiting and mood changes were so horrible for about the last 6 months before the tumor was found that my co-workers and family were actually debating whether or not an intervention should be held. I actually started showing signs(symptoms) when I was 14. I had gone to the doc several times complaining of very bad headaches. The doctor actually told me with my Mom in the room that "sex may help my headaches!" very comical! As of today I have gone through 2 more surgeries to remove 2 metal plates(one each time)but there are some that wont be able to be removed. I still have headaches which suck horribly and they are even worse in the winter when it's cold. That's when I can really feel the titanium plates in my head but all u can do is struggle and get through them. I often wonder if I will ever have any type of a normal life. If I can give anybody who may be reading this a piece of advice that really helped me, it's this: when I first got sick they put me on Dilantin which was horrible for me. Not to mention the monthly blood draws a person has to get. People like us already get poked and prodded enough in the hopital as it is! Not to mention, that dilantin also is hard on your body. It takes calcium from your bones and I know I had to take a heartburn medicine when i was on it. I've never had heartburn before in my life! If it works for people out there then that's really great, but I would have an occasional partial seizure while taking it. My neurologist switched me to a drug called Topomax generic name (Topiramate) I feel much better on it, no monthly blood draws and it's been able to prevent any seizure from occuring. I hope that can help some of you. And now I have a question for anybody who reads this, all of my doctors have told me that this type of tumor is not hereditary, so if i were to ever get off all my medication and could have a child safely that he/she should have a nearly 0 chance of getting a brain tumor like mine. Have any of you heard anything different? I look forwarding to hearing everybodys responses and its just nice to know that i'm not alone in this. Even though I dont think I could wish something like this on my worst enemy. Because most people dont have the courage or strength to face something like this.
[quote][/quote][/b]KNOWLEDGE IS POWER


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PostPosted: Sat Oct 01, 2011 10:19 am 
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Joined: Mon Aug 17, 2009 12:43 pm
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Location: Sydney, Australia
Hi Kaylan.

Welcome. I have two daughters, so I have wondered about whether there might be a genetic disposition to malignantbrain tumours. My highly regarded oncologist said outright that there was no evidence there was a genetic link (unlike some other cancers). A relative has far more chance ofcontracting one of the more common types of cancers.


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PostPosted: Fri Dec 23, 2011 9:35 pm 
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Joined: Tue Sep 06, 2011 5:45 pm
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Thank you. Forgive me, it's been soo long since I have checked my post to see if I have gotten a response! From what I understand and from what your doc has told you that all sounds about right. So, let us hope!!! Also, thanks for being kind and welcoming me :)


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