When a Headache Is Not Just a Headache

Sometimes you fail your children.  Sometimes you fail your children so completely that your not really sure you will ever forgive yourself or that you should be forgiven.  My oldest had been complaining about headaches when she would read or play video games for a long time.  She would tell me that her vision would suddenly blur for no real reason and that a scorching headache would follow. So I took her to our local optometrist for an eye exam.  During the examination I was told that she had seen some swelling in her optical nerves and that although it could just be a variation of normal we should take her to an ophthalmologist just to be sure and she made an apointment for her.

This is where I failed my daughter, we didn’t go.  I did not take my daughter.  I just blew it off.

Several months later I took her back because she had lost her glasses and we needed a new pair.  During the examination the optometrist once again commented about the swollen optical nerves and asked what the ophthalmologist had said about it.  “ummm, we didn’t go…”  She then asked if I would like for her to make another appointment for us.  “Well do you really think it is important?  You said it could just be the way her optical nerves are made.  We really have a lot going on…”  She told us that yes, she would really advise we go, that yes more than likely it was nothing but just to be on the safe side we should go and then she made another appointment.  When the time rolled around the babysitter  for the other children had something come up and couldn’t come so I called and rescheduled her appointment.  The next available appointment was in 3 months.

I took the much later appointment and never once worried about it.

On the day of the appointment  I shuffled some things around and on the way to the appointment thought of the 100 other things I would do after getting home from this “totally unnecessary”  consultation.  I told the sitter we would be back in an hour or two and complained about how doctors are always wanting to run all these expensive tests and that was what was wrong with our medical care in this country.  Waiting in the office my daughter and I sat and flipped through magazines and joked about all those little unimportant things that run through your mind when you have no idea that a real danger is just on the other side of the door.  Or lurking inside, unseen to your mother and beyond her imagination when you tell her you have a headache. 

After all the testing was said and done the news was not good.  Mazzy’s optical nerves are not just a little larger than normal, they are severely and alarmingly swollen.  All around the nice round space that would be a normal image of an optical nerve is the bright white blur with streaks running to the outer corners that is the evidence, undeniable evidence, of excess spinal fluid.                                                                   

It is thought that Mazzy has something called pseudotumor cerebri a condition that mimics a brain tumor and causes intracranial pressure for no obvious reason.  The result, if not gotten under control, is blindness.  Permanent, forever blindness.  That is what I had been playing around with, that is what I risked for my daughter for the sake of convenience and an absurd belief that somehow there could not be anything wrong with her.  Just headaches from not wearing her glasses.  Just a belly ache from eating too fast, or the wrong foods.  Just occasional vision blurs from eye strain after reading too much in poor light.  Just fine, nothing bad going to happen here, move along.  Only this time I had been wrong, so very wrong, and it cost my daughter.

We are scheduled for an appointment with a neurologist for the 4th of May but her medical team is working to try and get her in sooner.  I carry the phone around the house with me everywhere I go and every time it rings my heart leaps, maybe they are calling to say that they have worked her in.  Maybe, in the end, it will not be too late after all.  We have talked about the fact that a lumbar puncture will be a possibility to rid her of some of the excess fluid.  We have talked about how in most cases this can be treated with medication.  We don’t talk about what happens if medication alone doesn’t work.  We don’t talk about how much more seriously I should have taken her headaches…

Over the next few weeks I ask that you please keep my daughter in your thoughts and prayers as she goes through her treatments and travels the path of recovery.  Also I hope that you share this information with anyone that has a teen daughter that has been complaining of headaches, especially if she is overweight, as statistically that is the group that this condition most often compromises.  Usually a headache is just a headache, but sometimes, sometimes it is not.

10 thoughts on “When a Headache Is Not Just a Headache

  1. Sasha, your family will be in our prayers. Thank you for this article. This should be a wake up call to ALL OF US. This may save a life. Have faith that she’ll be okay and just love on her. Forget what could have been done and focus on what can be. Hang in there. Michelle’s friend – Holly Smith

  2. Wow, very powerful. Thank you for sharing your story. Prayers said for healing, not only your daughter but for your emotional healing as well.

  3. Oh, what a good reminder for us, that though we generally don’t care for the medical profession, there are times when they have their usefulness. I pray everything will go well for your daughter in her healing and recovery, and that you will not beat yourself up about this – it’s a mistake any of us could have made. And usually, a headache is just a headache, even from eye strain. Good luck! ❤

    • Thank you Becky, it was certainly a wake up call. I still don’t see myself becoming doctor obsessed but I am deeply grateful that medical ability has improved enough that such things as this can be treated. Once again, thank you for your kindness.

  4. {{Hugs}} Your post made me cry. Try not to see yourself as a failure. We all make mistakes and we are human. I have made some huge mistakes with Katie that would have changed her life if I would have gotten medical attention when she was young. It is so easy to beat myself up and feel like I failed, but I try not too. I made a mistake and can only look forward. Please, Sasha, only look forward and forgive yourself. I will pray for Mazzy everyday that she will be fully healed and recovery will go smoothly. She is a strong, beautiful girl and I know she will get past this. Be strong for her and for yourself. Sending all my love and prayers. – Amber

  5. Please don’t beat yourself up about this, Sasha. You are a great mom! We all make errors in judgement (I, too, tend to downplay my kids’ ailments), but the past is the past. Dwelling there won’t help your daughter or you – so let’s all look forward with prayer and hope. I’ll be praying along with everyone else. Big hugs to you, mama.

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