Tag Archives: Retinal tear

Rereading Childhood – How going back to favorite books brings comfort in rough times.

Recent surgery on my retina forced me to spend several weeks laying on my right side so my eye could heal properly.  I was prepared for the recovery and I’d set up several stations in our house.  I placed a low table for my laptop, Kindle and phone, baskets of books and magazines and a power strip at every spot to charge my electronic devices.  But three days into my recovery, I reached electronic overload. I had read through the magazines, skimmed through the books and the electronic reading was causing strain on my vision.  I needed a break. The only problem was – I love to read and just watching television or staring out the window was not going to do it.

In fact, I was feeling a little sorry for myself.  The eye surgery was a piece of cake compared to the restrictions of the recovery period.  A gas bubble in my operated eye was holding the newly fixed retina in place.  While it healed I had to keep it bathed in drops, bandaged for several weeks and keep my head down on the right side.  There was to be no driving, no work, no strenuous activity for 6 to 8 weeks.  It all sounds doable until you realize you don’t like being restricted to hours of lying still and being a hostage in your own home.

The problem was solved by happenstance.  In that, as I was heading to the kitchen for something to eat, I accidentally bumped into the bookcase.  With one eye patched I had a hard time with depth perception and sometimes came up short against objects.  Hitting the bookcase caused a stack of books to slide out onto the floor.  Although I wasn’t allowed to bend over, I could slowly lower myself to the floor and slide the books back together.  But as I went to put them back on the shelf I felt a row of books jammed behind them.  I reached back and out came an old copy of a Nancy Drew mystery!  I couldn’t believe it.  What was that doing back there?  I reached back and brought out several small stacks of books.  It was a treasure trove from my adolescence!

Whatever reason I’d been heading to the kitchen was now forgotten as I pored over the titles of  my childhood.  There was the dusty set of Little House books, The Great Brain series, the Cathy books and even, some teen novels based on The Partridge Family and The Brady Bunch!  I had spent hours of my adolescence and teen years reading these series.  I was kind of a bookworm and in those pre-internet days, I’d spent many a lazy afternoon curled up with a good book.  I thought I had given those away a long time ago, or perhaps thought they’d been lost in a move.  But here they were reappearing at a time when I needed them.

My favorite childhood books often had strong reliable characters, with good morals and exciting adventures – think Laura Ingalls and Nancy Drew.  The heroine might get into a scrape or two but she always rescued herself and came out on top in the end.  Maybe I could look at my recovery like that.  I was going through a bit of a rough spot but I was strong and I had been through rough patches in the past and gotten through those.   Maybe I could channel those childhood heroines and act as if my recovery was just a short chapter and by the end I too, would be better and looking forward to my next adventure.

It didn’t hurt to try.  I placed the books in the different baskets throughout the house and whenever I felt a little overwhelmed with my slow healing or had watched enough election coverage on the news or followed enough trending stories on social media  – I would escape for an hour with one of the books from the basket.  It helped.  I found myself getting lost in my childhood books all over again and when I’d close the book after the last chapter I’d feel a sense of accomplishment for the hero or heroine.  In addition, I felt a little better about my circumstances myself.  With each book finished I’d find myself a little more grateful for the simple fact that I was healing, that I could read – even with only one good eye and one blurry one.

I have a few more weeks to go in the recovery process until I can return to a more normal  existence, return to driving and return to work.  I’ve decided not to put the books away when I’m done but instead, keep them out.  The process of going back and rereading them has helped me on the road to recovery.  Kind of like long-ago friends.  I think I’ll keep them around.

Diagnosis of a Detached Retina

Diagnosis of Retinal Hole

I met with an Opthamologist at UCLA in late May who did a through exam and then referred me to one of their Retinal Specialists.  Since they are a pretty busy facility, my initial appointment would be with one of the teaching Fellows.  I was fine with that.  I was feeling a sense of urgency and would have welcomed anyone looking at it.  The flashing lights happened daily, sometimes several times a day and eventhough my past Opthamologist was content doing “watchful waiting” – I was not.  I wanted to have a specialist look at it and tell me what they thought.

In June I met with the Retinal Fellow at UCLA.  He did a thorough exam and then stepped back and said something that I’ll never forget.  “I would just like to page Dr. Prasad, our Retinal Specialist”.  The Fellow was very calm and professional but something about his clipped tone just then told me he was seeing something he wanted the head Doctor to take a look at.  I was in luck.  Dr. Prasad was in the building.  In about 15 minutes he showed up in the exam room and introduced himself and then with the Fellow looking on, Dr. Prasad examined my right eye.  He was very thorough.  Then he stepped back.  “It looks like you have a tiny hole in your retina and perhaps some fluid behind it.  We need to take care of that right away”.  I was stunned.  “Is that an operation?  Isn’t that an emergency?”  I rushed the sentences together.

He told me it would need an operation and although it didn’t need to be done that day, it needed to be done in the next seven days.  Dr. Prasad then took me into a lab room where he sat me in front of a computer that could take a picture of my retina.  Within moments he had the image of what he was looking for.  A definite hole and fluid building up in the retina.  “We need to get you scheduled for surgery “, he said.  I had been pretty stoic up till then but now it was hitting me.  My eye had a serious problem.  My past Opthamologist had not seen it and had just been doing watchful waiting.  I had noticed a decline in light and peripheral vision in the right eye and I knew something wasn’t right.  I just needed someone to confirm it.  Thank goodness I had made the call to UCLA that day.

We went back to the Opthamology waiting room where Dr. Prasad instructed his staff to schedule me for retinal surgery as soon as the next available opening.  As luck would have it, there was an opening at the end of the week.  As soon as it was scheduled I excused myself to the restroom where I ran into a stall and sobbed.  I had wanted answers, I had sought out a specialist to look at my eye and now, with diagnosis in hand – it was a little more than I could deal with.  I texted my husband to tell him what had happened and we spent the next 10 minutes texting back and forth.  I was in no mood to talk just yet but I just needed to know he was there.  We’ve been married a long time and he knew when I just needed someone to listen.

When I had calmed down I drove back home.  My husband and I went on the internet and spent the next week preparing for the surgery.   As we soon learned, it’s not the surgery that’s hard on the patient – it’s the recovery.  I learned that following surgery I would have an eye patch and most likely would have to spend days face down or at the very least, on my side.  The reason being that a gas bubble would be placed in the eye to hold the newly reattached retina in place against the back of the eye.  From what I read, the recovery can be pretty grueling with the requirement to lie flat at all times either on your face or side.  I did everything I could to prepare.  Bills were paid, laundry done, special pillows were ordered, I stocked the freezer with frozen meals and I called all my friends and family.  I went around the house setting up recovery areas in different rooms of the house.  I knew that trying to just stay in the bedroom would not work so I made sure I had little stations in the bedroom, living room and family room  – stocked with kleenex, wipes, sanitzer, charging cords and wastebaskets.  That way I’d have a place to move to every few hours if I needed a new vantage point during recovery.  I was ready.

Retinal Tear and Vitrectomy recovery

A little background on me…

I’m a Type 1 Diabetic.  I was diagnosed with it when I was 10, back when they called it Juvenile Diabetes because it primarily happened in childhood.  Now it’s just called Type 1 or T1D.  I’ve been T1D for forty-five years now.  I’ve been on an Insulin pump for the last 20 years and started a Continuous Glucose Monitor in the past year.

I’ve always been followed by an Endocrinologist for my Diabetes and the usual Dr.’s and Specialists that come with it.  About 10 years ago in 2005, I was at my Opthomologist for my regular annual visit and he said he saw something of concern in my eyes.  Alarmed, I asked what he saw and he explained he thought he was seeing the beginnings of Diabetic Retinopathy and wanted me to start seeing a specialized Opthamologist.  At that time, there was no one in that specialty in our Valley and he referred me to a colleague down in the next valley below us.  I made an appointment right away and for the next 10 years I was followed by the new specialist as he monitored my Retinopathy.

As a T1D we are at risk for microvascular complications.  The blood vessels in the eye are part of that and Retinopathy meant when the tiny vessels in my eye became blocked, my eye would generate new vessels to carry blood through the eye.  Unfortunately these new vessels are fragile and break easily.   Then the eye makes new vessels to replace those.  This process is known as reinopathy.  My opthamologist I was now seeing in the valley began monitoring me every four months and tracked the new vessel formation.  When the vessels affected my vision he would zap them with a laser to stop the growth and hopefully prevent them from continuing.

Fast forward to six months ago, a cataract in my right eye had reached the point that it was hard to drive – I couldn’t see freeway offramp signs clearly and night driving was becoming a glare of headlights.  My opthamologist referred me to his associate to assess it.  I was told a tiny risk of having a cataract removed was that the affected eye could have other problems down the road.  I didn’t really feel like I had a choice.  My driving/distance vision was interfering with my work since I had to drive long distances.  I had the surgery in December of 2015.

About a month following the surgery I noticed I had a flash in my peripheral vision.  Alarmed, I called the surgeon and he had me come in the following day.  After doing a thorough exam he explained that vitreous gel in my eye was tugging on the retina. Since the eye doesn’t really see but instead sends the images you see to your brain to be read –   each tug sent a message down the optic nerve to my brain which is in turn, was “seen” as a flash in my vision.

There was no danger at the moment.  He said the vitreous shrinks as we get older.  Yuck – I’m only in my fifties, I thought to myself.   Anyway , as it shrinks it pulls away from the retina lying on the back wall of your eye.  Usually it pulls away cleanly and people don’t really notice it.  But in some people (like me) it pulls in some places and each pull causes a flash in the vision.  But just to be sure, he referred me back to my Opthamologist in the same practice who was already monitoring my retinopathy.  Another thing to monitor I thought.  My regular opthamologist saw me the following day and concluded the same thing.  Come back in three weeks he told me, so we can keep a close eye on things.  Great.

I went back regularly for the next few months.  I had to.  The flashing lights drove me crazy.  About once every hour in my right peripheral vision it would be like a car was passing me.  Soft white light approaching, it would go across my vision and then be gone.  Unnerving to say the least. Yes, I knew what it was – retinal tugging -but now I could also Gooogle the hell out of it.  Bad thing to do.  I learned so much but also scared the pants off myself.  Basically I learned that the vitreous would tug on the retina as it shrunk, causing the flashes of light.  The flashes could go on as long as their was vitreous attached.  Some sights said six months to a year.  I asked my opthamologist about it but he was pretty noncommittal.  I realize that’s because each patient is different but a timeline would have been helpful.  My doctor was doing watchful waiting as he called it but for me, it was just driving me crazy.

With these types of eye things I realize you are kind of on your own.  The Doctors can only tell you so much because they can’t really predict what’s going to happen to each and every eye they examine.  They can give you guidelines but that’s about all.  Finally about three months into the watchful waiting, I had had enough.  The flashes of light had not slowed down.  They still came regularly about every hour or so.  Each time I’d wonder, is this the last one.  In the back of my mind was what I’d learned Googling, that the tugging could cause a hole or tear in the retina.  Spots, floaters, a veil or curtain across your vision – that would be my only sign that the retina had a tear and that would be an eye emergency.

So in April, I came to realize I needed more answers.  After another frustrating appointment where my Doctor did a thorough eye exam and then studied all the latest images of my eye, he said everything was quiet.  I wanted to explode.  I’m having flashes every hour I reminded him.  I’m worried that this will will tear when I’m away from home, at work or even on a trip.  How long will this go on?  No answers.  I mentioned things I had learned from my internet searches.  A vitrecttomy, retinal repair.  Oh you don’t want to have those he told me.  No, I certainly didn’t but this watchful waiting was taking it’s toll.  At least I wanted a guideline of what he was looking for and what his plan was to address it.  I was so frustrated.  He had been following me for 10 years and now I felt like he didn’t know or want to let me know what the plan was.  This was my vision we were talking about!

I came home that day and developed a new  plan.  I was already part of UCLA for my diabetes care.  I was being followed by an Endocrinologist through their Diabetes program and I was pretty happy.  Dr. Ahn was following my pump therapy and had convinced me to start Continuous Glucose Monitoring to bring my A1C into tighter control.  We were doing that and I could see the results in my numbers.  It made sense if UCLA was able to do this for my diabetes that they must have something they could do for eyes as well.  I went online and learned that they did.  They had something called the Jules Stein Eye Institute.  I called them that very day.  After running my insurance I was told I could make an appointment. As luck would have it, they had an opening in two weeks with one of their opthomologists.  I had just seen my Dr., so this new appt. would coincide with what would have been my next follow up.  I actually felt relieved.  Someone had once told me years ago, that to get the best care for my diabetes I must go to the Big House.  When I looked puzzled, he explained that the Big House is any hospital affiliated with a teaching institution.  It would be the place where clinical trials and new research was being conducted. Doctors there would be at the cutting edge of treatment and patients could benefit from knowing that they were getting the latest care.   In LA, UCLA would certainly qualify as  a Big House.  I chose them for my Diabetes Care.  Now it made sense to choose them for my eye care.