Update

by Janie Jones

Thank you to everyone for your prayers and kindly posted comments of support earlier this week.

It has been stressful times at the Jones household these past few days.

The verdict, however, is that there is one of two things wrong with the wonky eye.  One is a kind of optic neuritis.  However, this is unlikely because optic neuritis if left untreated tends to progress to blindness very quickly and if it were some kind of optic neuritis I’d likely already be blind in my left eye so they’d know for sure that’s what it was.  Never the less it is easily and inexpensively treated with prednisone, if caught early, so I’m taking the two week treatment just to be sure that it’s not some unheard of and less quick acting version of neuritis.

No one really expects this to work however, the more likely diagnosis is optic nerve sheath meningioma.  This is where a generally benign tumor grows on the sheath that protects the optic nerve causing vision changes and loss and occasionally protrusion of the eye and pain.  While this type of tumor is generally slow to progress, it is somewhat possible that it could spread to the brain in time.

If, at the end of the course of prednisone, we rule out neuritis and settle for certain on the tumor diagnosis, the specialist feels my best option is to have a 26 day course of radiation treatment.  While there is no urgent need to schedule such treatment, progression of the disease will move slowly, it is possible to lose more vision and run the risk of growth of the tumor if we wait too long to act.  Some people though can apparently go years without significant advancement of the disease.

The specialist tells me that radiation treatment can halt progression and in some cases vision can revert to normal.  However, being a very rare condition, few radiation oncologists have much experience with this kind of treatment and it is unlikely to find anyone close to home who can confidently manage my 26 daily treatments.  The best to hope for is to find a confident doctor in the Big City where I go to University, and in failing there, my next option is to see a physician in the Major Metropolis where I saw the neuro ophthalmologist.  The problem either way is that there is a lot of travel and expense involved, as the 26 treatments must be doled out daily for 5 weeks.  It is out of the question to commute to the Major Metropolis, being some 7 hour drive round trip, not including time for the treatment.  Should I miraculously be able to overcome the distance to and cost of treatment, I’d have to drop out of school for a semester, during which I’d lose funding and possibly my insurance.

The costs associated even with driving to the Big City near my University is still in the range of $175 a week.   Waiting about 6 or 7 months, provided we can find a radiology oncologist there that seems trustworthy, seems to make going this route next summer my best choice as I might be able to maintain full time student status during the treatments as the University only requires 6 credit hours for summer term and many are online.  Then my only worry will be how to afford the 20% of the radiation treatments that my insurance won’t cover, providing they cover the treatment at all.  The neuro ophthalmologist tells me that this type of procedure does tend to be expensive.

The saddest part of all this is that in the summer of 2010 when I first started noticing vision changes my local ophthalmologist did suggest I see the specialist down in the Major Metropolis right away.  However, all tests came back negative, the local radiologist reading my MRI overlooked the changes in my optic nerve sheath and, the local doc thought it might be a fluke reaction to an ordinary virus and may just resolve on it’s own.  Not wanting to be a  hypochondriac, and being a cheap-skate not wanting to spend the $200+ dollars on a trip to the Major Metropolis  I decided to wait and see if it resolved.  We were lulled into a false sense of security, because optic nerve examinations over the fall, winter and spring seemed to show a decrease in swelling.  Unfortunately, the symptoms did not continue to go away, and actually have become somewhat worse than in the initial exam.  While I have to accept I made the decision to wait, I can’t help but wonder if I’d have not felt so complacent if the first MRI had not been misinterpreted.  Perhaps then if the radiologist and physician locally had said you have an abnormal MRI which we don’t have an explanation for, I’d have been more eager to get the second opinion, especially then when I had insurance that would cover everything but a small copay.

When you’ve been healthy all your life and your family has been healthy for generations without bizarre medical complaints, you have a tendency to think, “Oh, this will pass.  Don’t be a baby.”

*Sigh*  Such is life they say.

It is said that the Universe never gives you more than you can handle.  In that case I’m just waiting for that 6-pack of whup-ass I drank to kick in and give me strength, cause it looks like I got yet another truckload of problems to bear.  But first I have to go and do my Spanish homework.  And then my Environmental Health homework and my computer class homework.  Oh, and go to the park and write a paper about the physics properties employed by playground equipment.  And do the laundry.  And get some groceries with the $30 I have left after financing my trip to the Major Metropolis before next pay day on the first of the month.  Oh, and put gas in the Jeep because my economy car that I normally drive goes into the shop next week to have the crack in the manifold fixed so I don’t die of CO or CO2 poisoning while driving to school.  Then help the spud with her homework.  I think I’ll put off washing the dog, taking the raked leaves and yard waste to the dump, and cleaning the bathroom and the rest of the house.   I can probably make TV dinners without actually having to wash dishes.

And that’s all the whining I’m going to do for a bit.  Feel free to throw cheese and play violin music.

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4 Comments to “Update”

  1. Ooomph. My mind is boggled. By all the homework as much as the odd medical stuff. Maybe a six pack of something else when you’re waiting on the whup ass?

  2. Wow, Janie, this is all really tough. The doing-it-next-summer idea does sound best.

    Don’t look back and blame yourself, we’ve all done the “this will pass, don’t be a baby” thing (listen to the man who ignored his first two blackouts, he knows of what he speaks), otherwise we’d panic about everything and that’s not a life worth living.

    (BTW, you’re only telling us we’re free to throw cheese because you know we can’t hit you from here).

  3. We can’t know if we’re making the right decision until it’s too late; all we can do is make the best decision on the information available.

    You are in my prayers.

  4. I’ll say some prayers, send you some good mojo, but won’t try to do a cheer. Besides the embrassment, more than likely, I’d end up in the emergency room.

    “Would you please explain, once again, how you hurt your back.”

    “Well, I was really trying to offer some encouragement, when I fell out the window.”

    “And the baton?”

    “I’d rather not talk about it.”

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