Retinal specialist

My experience with Avastin shots pt 3: What the injections were like

This is part 3, if you want to read what led me to the point of needing these injections read yesterday’s post.  If you are squeamish about things touching your eyeball this is your pre-warning.  When you come to the actual warning, stop reading! After 3 months of observation and very little improvement, my ophthalmologist referred me to a retinal specialist.

Crazy eyes

The pre-exam stuff

I will now recount to you the events of my first visit to the retinal specialist.  It began with a battery of stuff, dilation, tests, and at least 3 types of images taken, one involving dye administered through an IV.

The exam

When the doctor came in, he examined me just as you would imagine, by shining a bright light in to my eye.  It has been a long time, but I will try and quote him directly.

He said, “You have a scar on your retina and a lot of blood vessel growth which is causing fluid to leak.  It is idiopathic, which just means we don’t know why it is occurring.  It looks like the wet type of macular degeneration, but you are way too young for that.  It is similar to histoplasmosis, but you don’t have the other symptioms of that.  We are going to treat it by giving you a series of injections.” “Injections?  In my eye?  Whoa." “Yes.  We are using a drug called Avastin.  It is actually a cancer drug most often used for treatment of colon cancer.  Your insurance will probably not cover it because it is not FDA approved for this purpose but I have done hundreds of these, and it is the best treatment.  It will stop the growth of the blood vessels, which will hopefully make the fluid stop leaking.  You should get back some of your vision.  It will never be like it was before, but you should see improvement.”

That was it, the bomb was dropped.  A man I had met 10 minutes earlier was planning to literally stick a needle in my eye.  I was freaked out.  I don’t know what I was expecting when I went, but it was not that. The injection I went to a room to prep for the injection.  The prep basically consists of a multitude of drops.  All these drops are designed to numb your eye so that you cannot feel the actual injection.  This is probably a 30 minute process.  After you are sufficiently numb here’s how it goes.

*You will want to stop reading here if you are squeamish*

 

These are the devices used to torture me

*seriously I’m warning you*

A swab of some sort of disinfectant is applied.  Then the lid-spreader is put in.  (I don’t know if there is a technical name for this device, but it is a metal clip that goes under your top and bottom eyelids to make closing your eye impossible.)  While the lid-spreaders are in, you will very much want to blink.  You cannot.  It is not a pleasant experience.

This all moves very quickly.

None of this seems particularly gentle. (especially considering that it is your eye)

The doctor waves his hand and says look here.  (I was getting the injection in my right eye so this was somewhere off to my left.) Then while you are looking, he gives you the injection…directly into your eyeball.

THIS IS EVERY BIT AS CREEPY AS IT SEEMS.

You cannot actually feel the needle pierce your eye, but there is no question whatsoever of when it went down.

You can see the medicine enter. It looks like dropping a few drops of food coloring into a glass of water.

Then they take the spreaders out

That’s it. It is awful!

But it is not the most awful thing ever.   And as you keep reading you will see that it is worth it. I had 3 injections.  On one occasion, when the needle went in, everything went black.  It was frightening for me, but the doctor and nurse were both not concerned.  That was comforting, but I was in mild freak-out mode.  If I had known beforehand that that sometimes occurred I would have been less likely to freak out. (That’s why I’m telling you now.) My vision came back within a minute or two.  It returned slowly like an old-school television turning on. The aftermath

I have a close friend who is my age and has also had several of these shots.  She would corroborate this experience.

Although only getting a shot in your eyeball, you will feel terrible for the entire day.  First of all, your eye is incredibly itchy and watery.  Sometimes it is also achy.  Putting ice on it helps.  This is going to last until you wake up the next morning and it may last into the next day.  Don’t plan a big day.

I feel that maybe I haven’t said that strongly enough.  Your eye will be VERY itchy and achy.

For me , the itchiness lasted a few days but it was much more tolerable after day 1. You get a really neat floater.  It’s a bubble in your eyeball juice.  One time I had 2 bubbles.  If you can center the bubble right in the middle of your vision so you can look through it, it is like a giant magnifying glass. For me the bubble lasted as long as 3 days. Get ready to wear your glasses.  I wear my contacts 99.9% of the time when I’m not at home, but I was not allowed to wear them for a week after each shot. The results For me the results are miraculous.  I can now see 20/25 in my right eye.  And although I can still see the scar, I could easily pass the drivers license eye test.  I can shoot, I can read with only my right eye, and I can do everything I could do before.  Your brain has an amazing way of combining the vision from both eyes so that I never notice the scarred place.  The only time my vision is ever a problem is in fine detail work.  Sometimes it takes a few tries to get the fishing line through the eye of the hook, etc. getting a shot in your eyeball is truly a horrible experience, but I would do it again.  In fact I would get a hundred shots for the results I have received.

Other thoughts As you can imagine, it is not cheap to visit a doctor whose sole job is to know about and treat one part of your eyeball and your insurance will probably not cover it.  It is worth whatever it costs. I’m not trying to disturb anyone with this.  I really wish I had some concept of all this before I walked into the retinal specialist that first day.  My goal is just to let you know what I didn’t know.  I hope you find it helpful.  If so, let me know in the comments.

My experience with Avastin shots pt 2: Why the need

How it all started It started simply enough.  Approximately 2 years ago I noticed an artifact in the vision of my right eye.  I would describe it as similar to the blind spot you get after looking at a bright light except that it persisted.  I ignored it for a while, then I began to notice that things were also looking warped.  So I made an appointment with my optometrist.

My optometrist dilated my eyes, examined me, and was clearly very concerned.  She referred me to an ophthalmologist that same day.  He diagnosed me with a fuch’s spot or a lacquer crack and said that in all likelihood there was nothing that could be done.  For a while he simply observed me. It got much worse.

The effects My retina hemorrhaged and made a large blood pool. It was very near the center of my vision and so I was functionally blind in my right eye for a period of months. After the blood pool mostly dissolved there was significant leakage of eyeball juice*, and a severely warped / blind place in my central vision.   To illustrate how blind I was, when I went to renew my driver’s license I couldn’t pass the eye test.  So I had to get a waiver from my optometrist.  At that point I could only see the biggest E (20/200) on the eye chart.

Retinal scar

How it felt

I do not mean physically, how did it feel.  There was no pain.  I never experienced any discomfort with my eye whatsoever during this entire process so far.  Unless you count the dilation and bright light being shone in repeatedly every 2 weeks over the course the observation.  There are no nerve endings in the retina, consequently there was no pain.

However, over this period of a couple of months I did have to come to terms with having no vision in one eye.  It was a sort of odd grieving that is hard to explain.  I wasn’t disabled in any real way.  I could still read and drive, and function in every way that I could previously, but I still had to come to terms with it.

Just when I felt that I was coming to terms with this loss of vision, I remember picking up a gun, and realizing that I could never shoot again, or that I would have to learn to shoot left- handed.  This realization kick-started the whole spiral of depression and dealing with loss all over again.

I am not saying this in order to earn pity.  I am just reporting what I experienced.  This grieving over the loss of my eyesight is at least as significant as any pain that I incurred with the injections.

Speaking of Avastin injections, you want to know what they were like don't you?  I know, I know that’s why you are still reading this ridiculously long post.

That part comes tomorrow.  Click here.

* I know it's not called eyeball juice but it's a funnier word than fluid and this topic needs some levity.  Even though ocular fluid is called humour it is not funny at all.