Knowledge is power…that can cause fear

So I decided to use this amazing thing called the internet and put it to use by researching Evan’s newly diagnosed condition.  Optic nerve swelling is called papilledema.  Upon reading the symptoms, diagnosis and treatment I was encouraged and then boom-my breath caught and I am frustrated again.  Bottom line is that the treatment for this swelling is to determine and treat the cause.  In Evan’s case that means treating his grade four brain tumor.  If chemo doesn’t help then what?  He has already two parts of the trifecta: radiation and surgery.  Chemo is coming soon.  So not to scare anyone, but knowledge is power!  Instead of waiting for the doctors to call I decided to gather more information for myself.  Now, I am not sharing this with Evan or the family until we do hear from the doctor, and I don’t think I am reassured by this knowledge, afterall I was hopeful that this could get solved by steroids, but at least I know…what the condition is called?  I will have to continue figuring out how much information I should look into with all of this.  For instance, one thing I am not interested in anytime soon is survival statistics.  I caught a glimpse one day and swore I wouldn’t look again.

The symptoms are as follows (described by Evan and confirmed by the wide web of information):

  • double vision
  • blurred vision
  • limited vision-Ev lost peripheral vision
  • nauesea
  • vomiting
  • headaches
  • pressure behind the eyes
  • whooshing sound–this one really got me because this is the sound Evan always hears before a seizure and it bothers me because this is a symptom….this is why I do want to research, but because I am not going to get a medical degree with credible sources it also scares me

If you have multiple symptoms listed above go get checked out by an ophthalmologist.  Ask for a visual field test.  This prompted another test that showed the actual optic nerve.  I tried to recall what it was called and research it, I believe it was an EVT but couldn’t find anything online…nonetheless from there depending on if you have a preexisting condition will depend on the next step.  Evan had an MRI done two weeks ago, but the ophthalmologist may suggest a new one.

All I can recommend to you is that you speak up and make sure your provider hears all of your concerns and symptoms.  Keep a detailed log of your symptoms.  Record what it is, the date it started, the time, the occurrence, what you were doing before you experienced it, the duration and if anything you tried relieved the symptom.  This could help on multiple levels.  If you think you have a serious issue, bring it up! 

I can’t tell you how many times I have been asked how Evan figured out he had a brain tumor (I will save that story for another day).  But no, just because you have a headache doesn’t mean you have a tumor growing…record the details folks!  Do the research, but don’t go crazy and self-diagnose.  Knowledge is power.

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One thought on “Knowledge is power…that can cause fear

  1. Its so scary and sad when someone you love is ill, especially when you feel so out of control of curing it – I am sending love and support over the web – hope it arrives intact and without any statistics!

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