The Rest Of The Story

Myopic Macular Degeneration.  When I first heard the term, I had no idea what it meant.  My retina specialist explained that, because I am very nearsighted, there is a great deal of stress on the back of my eye.  As the eye lengthens, the tissue in the back of the eye (macula) thins out and becomes susceptible to bleeding.  A tiny bit of blood in the macula was causing me to see vertical lines as looking broken.  My rs told me that there was very good news.  A new treatment had proven very effective in the treatment of this bleeding.  He scheduled me to come back the next morning for PhotoDynamic Therapy and a shot of Avastin.

I immediately went home and searched the internet for information about myopic macular degeneration.  I didn’t find much about it.  I found LOTS of information about age-related macular degeneration (AMD).  This comes in two forms – wet and dry.  AMD is increasing in older adults.  In fact, when people find out I have Myopic Macular Degeneration, they usually tell me that their grandmother or their uncle or some other elderly relative has it.  I know that they mean AMD.  As I understand it, Myopic Macular Degeration is similar to wet AMD.  Both lead to central vision loss.  One treatment for both is shots of Avastin or Lucentis into the eye.

I have written before about the first day that I received PDT and my first shot of Avastin.  It was scary but not horrible.  The miracle was that within a few days I stopped seeing broken vertical lines.  Telephone poles no longer looked as if they had been chopped in half.  I could read the type on my computer screen.  I was so amazed at how quickly my vision improved.  The PDT did leave me with some permanent “blind spots” in my central vision.  Overall, I was thrilled at the improvement.

As quickly as things improved, they soon began to go downhill again.  The bleeding came back and I needed several more shots of Avastin and one more PDT treatment.  Eventually, my vision settled down and I began to relax.  Then, the vision in my left eye (which had experienced a macular tear years before) really began to lose ground.  Finally, my rs decided that I needed a Vitrectomy.  This surgery was much more involved than a PDT treatment or a simple shot in the eye, but it went well. I recovered quickly and my vision soon improved.  I remember that, a while after my surgery, I went to his office and my vision was remarkably improved in both eyes.  I was actually seeing well.  With my contacts on, I was really seeing almost “normally.”  Not 20/20, but very well.

Sadly, this improved vision was temporary.  Each time I have visited the eye doctor since then, my vision has been a little worse.  A little worse and then still a little worse.  Unlike that first visit, where the rs was able to diagnose MMD and offer hope that treatment would help, there are now no easy answers.  On my last visit, my retina scans looked great, almost perfect.  My eye looked healthy.  And yet, my vision was terrible.  I did have a cataract, which he had warned me would be a result of the Vitrectomy, but he didn’t seem to have confidence that removing that would change my vision very much.  PAM and LI tests seemed to prove him right.  Still, he sent me back to my regular eye doctor to see if my poor vision could be better corrected with a new prescription.  That visit was kind of depressing, since my vision tested at 20/400 in my left eye and 20/100 in my right eye with my contacts in.  The good news was the eye doctor really believes that removing the cataract would do a lot of good and improve my vision in my left eye. I will return to my retina specialist in a couple of weeks to see if he agrees.

So, now, my story reaches the present day.  I see well enough to get around without a cane.  I no longer drive but can go anywhere I need to on public transportation.  I can do my job with the help of assistive technology.  I have some struggles, but I am very blessed to have a good, solid support system.  I have great family and friends.  When I was a girl, I used to pray that my vision would get better.  I hated those coke bottle glasses.  I hated being clumsy, which I now realize was because I couldn’t see.  When I was diagnosed with MMD, I prayed that I wouldn’t go “blind,” by which I meant that I wanted to still have light perception.  I now know that Macular Degeneration destroys only central vision, not total vision.  Now, I try not to worry about where my vision deterioration will end.  I focus on what I can do and on learning how to adapt to reduced vision each step of the way.

I understand that I can live a full, rewarding, joyful life no matter what my vision may be.  A disability is only as much of a stumbling block as I let it be.  I don’t have much control over what happens with my vision.  What I do have control over is my attitude.  I want to work at keeping a positive attitude and finding beauty and grace everywhere I look.

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8 thoughts on “The Rest Of The Story

  1. Hi, I am 36 years old , diagnosed with MMD. I see wavy with my left eye and got shot of Avastin on march 27th, I dont see any improvement so far . I started to see a little wavy with my right eye.When i mentioned to my RS on the same day i had shot in my left eye, he said treatment in my right eye is not going to help me now? Do Dr’s have to wait to reach a certain stage of waviness to treat? My next appt is MAY 1st. I am afraid that soo i would start seeing wavy with both eyes and cannot function. i have 2 little one to raise .Can anyone help me if ou have any information. Thankyou so much.

    • Hi Sheila,
      It took several shots of Avastin before I saw any improvement. Don’t give up if you don’t have any change after one shot. It takes time but it does work. Best of luck to you and please keep in touch.

  2. Have just recently been diagnosed with myopic degeneration in my right eye. Very nearsighted; have been for the past 50 years (I am 56). Have quite a bit of thinking to do about the near future. Live alone, an accountant, own my own home…all can be managed with one good eye. However, concerned about the “what if” it happens to the left eye. But you are right, cannot control what happens to my vision. Love to read, garden, and run; so want to be able to enjoy those activities more while I can without difficulty. Can’t afford to retire or work part time where I live, so may have to sell & move. These are the life altering decisions I wasn’t quite ready to make. Hoping God has a better plan for me. Praying and putting my faith in Him that I will make the right decision. Thank you for sharing your story. Parts of it were spot on to my own situation. Always had a fear of going blind.
    NG

    • Thanks for writing. I try not to torture myself with “what ifs.” That kind of thinking sends me down the wrong path. Try to take one day at a time and God will supply the grace you need. God bless and keep in touch.

    • Thank you so much for writing. I’m sorry it has taken me so long to respond. I am glad that you can feel fortunate and look for blessings. Keep being grateful and please write again.

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