More Surgery! Tube Shunt Removal and ECP

Did I just write MORE SURGERY???   Yes I did!     Can I say "Disruption" and then turn around and say "Grateful"?    You bet I can! 

GRATEFUL for Grape Hyacinths growing in my garden too!

At my glaucoma appointment this week, surgery was scheduled for Wednesday, April 11.    My 11th eye surgery on the 11th!    As much as surgery disrupts life for a bit, I am looking forward to it - because it will hopefully address multiple issues.   

Bottom line, the tube & plate on the lower nasal side of my eye will be removed and I will also undergo a laser surgery known as EPC (which basically shuts down some faucets of aqueous fluid - more on that in another post).   

So why is a tube shunt being removed?    

First of all, one of the complications of glaucoma tube shunts is that they, over time,  may get exposed to the outside of the eye and cause a risk of infection.    This is the second time this tube has done this - so rather than continually deal with it with no real benefit (this tube has never really "worked") - it's gone! 

Second, this particular tube shunt is known as a Baerveldt.    The plate of this type of shunt lies in/near the eye muscle - and one of its complications can be strabismus and double vision.   I have noticed for several years now that when I look at my right eye in the mirror - it somewhat floats up and outward.   Since my last DSAEK six months ago, when I could start seeing a tad better, I often see ghosting & floating double images.    Honestly, it has been driving me a little bonkers over the past couple of months.   So HOPEFULLY, by removing this tube shunt, my eye may straighten up a bit and the double vision will subside.   

Third, getting the tube shunt away from my endothelial transplant will be a good thing.   No tube near or against the transplant tissue - less chance that tissue will get damaged - thus reduced cornea swelling - meaning being able to see clearer!   

So based on all of this, I am GRATEFUL this is a path we are going down.   I took my doctor's "first available" surgery time slot - I am willing, anxious and ready!

So what about my eye pressure?   Still a little high - but this is where the ECP comes in.   More on that later!  

CHOOSE to LIVE today!   BE GRATEFUL!    ALL IS WELL!

Might As Well Laugh

A couple of years ago, I bought a bag of ornaments at a church rummage sale and when I got home and sorted through the bag, I found the following charm ornament:

I became endeared to it and hung it off a cabinet handle that sits just above my computer.  I rarely notice it - except for today.  

Today I had my three week glaucoma tube shunt reposition surgery followup appointment.   I was surprised.   I told my husband just last night that I thought my eye pressure was going to be "17" - a normal, very good reading.    Wrong.    It was "25" - essentially the same pressure it has been for the past couple of months while we were waiting for the cornea transplant to calm down and to see if some meds could help bring the pressure down.    Frustrating!    But the good news is that my cornea was looking a little clearer - due to the tube no longer bothering the transplant.    So, some good news among the not-so-good news.   

Add to that, the tube on the lower nasal side & its patch graft is thinning.   And something is going to need to be done about that.    That's another discussion and post at some other time.  

So the action plan....adding one more medication drop daily and back to the doctor's office next week to see if there is a change.   In my gut, I know what this ultimately means - more surgery - it's just a matter of when.   My glaucoma specialist has a different procedure in mind and if and when it gets scheduled, I'll be sure to share it here.    

When I came home, I noticed that little charm hanging above my computer - MIGHT AS WELL LAUGH.   I know it is God's message to me today.    Being glum or worried is not going to help so what's the alternative?  How about a little laugh?   Which is exactly what I did.  It lightened my heart, it made me LIVE my day.   It was the response I CHOSE - and it felt great!

So remember

MIGHT AS WELL LAUGH!

My Last Surgery - Understanding the Eye with ICE Syndrome (The Glaucoma View)

Have you ever studied a diagram of the eye?   One that labels all of the different parts?   And then stopped and thought how each part serves a specific function - and that each part must work together with all the other parts?  All for the chance that your brain may interpret the results as "sight" and "vision".    How amazing is that?

I have been diagnosed with ICE Syndrome for nearly 12 years and I have gone through 10 surgeries on my right eye.   Throughout the diagnosis, complications and surgeries, I usually end up studying the "eye" in some way - trying to get a better understanding of what is going on.    At my doctor appointment prior to my last surgery, I heard some terminology that I was not familiar with - so I decided to educate myself a little more.   And through this little education and understanding of my last surgery, I thought I'd pass the information on to you.    My explanation is not scientific - and it may not be 100% accurate - but I'll give it a try.  

Source: britannica.com

Let me start at the beginning.     ICE stands for Iridocorneal Endothelium Syndrome - a disease of the cornea....     Specifically the endothelium layer of the cornea.   

The cornea is the clear front part of your eye.    This is a pretty familiar part - for if you have ever been been prescribed glasses for distance, it is usually due to a change in the shape of the cornea. 

Well, the cornea is made up of layers....all serving a different function.   The inner most layer is called the endothelium and its major function is to help pump out fluid in the cornea.    With ICE, this endothelium layer is "sick" and causes all the ICE problems...light sensitivity, high eye pressure resulting in glaucoma and corneal edema.  

Behind the layers of the cornea, is an open space called the anterior chamber....and in the simplest terms I can describe, it contains "drains" that allow eye fluid (aqueous humor) to flow out of the eye - thereby keeping eye pressure "normal".  

Next comes the iris and the pupil.   We know this as the colored part of the eye and it expands and contracts depending on the lighting condition....making the pupil larger or smaller as it adjusts to light.  

Behind the top and lower part of the iris is a small area called the Posterior Chamber.  I had never heard of the Posterior Chamber of the eye before - until my last surgery.   More on this later.

Next is the lens and behind  the lens is the rest of the eye - a gel-like vitreous fluid, retina, optical nerve which ultimately sends signals to the brain and much more.   I still have a lot to learn about this part of the eye!  

Let's focus on why ICE causes the high eye pressure and how my doctor has tried to fix it.

The abnormal endothelium layer of the cornea starts doing strange things ...like a membrane starts growing over it, covers the drains in the anterior chamber and starts impacting the iris.   The result:  it starts distorting the iris resulting in a change shape of the pupil - or in some cases - creates multiple pupils.     The effect:   a change in eye color and extreme sensitivity to light for the function of the iris to contact and expand to changing lighting conditions has been severely damaged  - so the pupil can't change size any longer.  

The abnormal membrane also plugs up the drains - so now the aqueous fluid has a difficult time escaping the eye.   Eye pressure increases which pushes on both the front and back part of the eye.   The most dangerous is the pressure build up on the back of the eye as it pushes against the vitreous humor and ultimately to the retina and optic nerve.   Too much pressure and for too long - the optic nerve gets damaged, retinal cells start dying - and vision loss starts occurring.    Damage to the optic nerve - no message to the brain.   Pressure on the front part of the eye results in blurry vision.    All not good.  

Because the abnormal membrane can sometimes grow & spread rapidly, a simple laser surgery or typical trabeculectomy won't have a long life because the membrane will quickly cover the drains created by the surgery.   So a glaucoma drainage device(aka a tube shunt) is implanted.   The tube is inserted into the anterior chamber and its base plate for the fluid to dissipate through is sewn onto the peripheral edge of the eyeball - far from being in visible view. 

So now, that should solve the eye pressure problem, right?   Not always and sometimes not for long.  Scar tissue, eye debris, etc. can clog the tube - which can mean either a revision to the existing tube or even a new tube.   It's all very complicated.   

In my case, over an 8 year period, I have had three tubes positioned in the upper right, lower right and lower left of the anterior chamber of my right eye.    What I didn't really understand a year ago, is that these tubes can impact existing and newly transplanted corneas.   They can definitely jeopardize the initial "installation" of the transplant and then they can somehow start poking on a newly transplanted cornea - irritating and preventing it to function properly.   I know - confusing and complicated. 

SO - to try to make a long story shorter - prior to my last surgery several weeks ago, not only was my eye pressure getting too high (probably due to clogging of the tubes), but the tube in my upper right anterior chamber was impacting my September 2011 newly transplanted corneal endothelium tissue.   

SO - my glaucoma doctor removed the tube - but not the base plate - and switched its position to the POSTERIOR CHAMBER,  right behind the iris.   It's a very small space - but with ICE progression, my iris has moved forward - creating just a little bit more room.    The tube is away from my cornea so it shouldn't bother the transplant - and hopefully will have a less chance of getting clogged.   The tube is close to the lens - so of course all of that has to be watched.

So, if you aren't an ICE patient - my apologies for the lengthy and confusing discussion.  

If you are an ICE patient - what is the take-away from this?   Just be educated.  If your eye pressure is building and medication drops aren't working and your doctor is talking about a tube drainage implant, talk to your doctor about anterior vs. posterior chamber placement.   Which is possible? What are the pros and cons?    Can a tube positioned into the posterior chamber be of benefit in early treatment - or is it a last resort?   By the time you may need more than drops, there may be lots of other things to try.   I'm not a doctor - I'm just a patient who has been through a lot and I just want to pass on what I am learning through my journey.  

 My disease has progressed - and I'm running out of options.   At this point, I'm just glad that this option was available.   If it works and it stays away from my cornea - I'll be one happy camper.  

Thanks for reading & sticking with me!  In a future post, I'll write about more about corneal edema issues with the ICE Syndrome Eye.  

Have an awesome day!   BE HAPPY & LIVE TODAY!

The Ebbs and Flows of ICE Syndrome & My Reason for this Blog

I want this little blog website to be a safe and soft place for you to land.  You can be a friend who just likes to peek in every once in a while and hopefully be uplifted in some way....   OR you can be a fellow ICE patient who just needs to know that someone understands.  

If you want to share your story and thoughts with me - you can.   You can post a comment, you can send me an email - I love hearing from you!  Or you can subscribe to my updates via email or a reader without me even knowing who you are.   You don't have to do anything at all but search for my website and read.  It is your choice.  It's all good.  This is what I love about blogs.  

BUT I WANT YOU TO KNOW THAT I'M HERE AND THIS IS WHY: 

ICE disease is a series of ebbs and flows.   The initial symptoms and the diagnosis are the beginning of that first ebb.    Feelings of high eye pressure & pain - and/or words like rare, lifetime, surgery, transplant, vision loss - create an initial wave that crashes down on us.    And then - finally - eye drops may start working and the pressure begins to stabilize.    The first flow happens - and life returns to normal.    But oftentimes without warning - the ebb will return - sometimes at tsunami force.   And the cycle continues.   The new ebb?  Perhaps higher pressure, more eye pain or decreased vision leading to different drops, glaucoma surgery, cataract surgery, cornea transplant surgery, on and on   Thankfully there are usually calm flows between those ebbs to give us rest.   MOST thankfully, it is not life-threatening.   It's just all part of the ICE life.  

Over the years, I have seen "ebbs and flows" in online discussions boards that involve ICE Syndrome.    The boards can be very active with discussions & sharing over a period of time and then they can become very quiet.    And then someone - in their OWN ebb - needs support and they reach out - and no one is there.     The discussion board is quiet.   It is not that no one cares - because I KNOW we ICE patients want to help and support each other.   It's just that life gets busy and there are very few of us.  We have schedules, we have deadlines, we have family matters, we have life to live.   Our ICE disease gets quiet - and our preoccupation with it wanes.    Take a look at my own blog archive - there are times when I am inactive for weeks.    Life gets busy.    

But my goal is to never have someone call out for help - and no one be there.  I felt led to start a dedicated ICE blog and email address as a way to avoid that lonely situation.   As a way to give others some support and encouragement.   

What has surprised me the most is how much this blog has helped me!    It has enabled me to process my own feelings and make me realize the importance of my faith for strength.    Most important, for those that I have communicated with - both ICE and non-ICE, you have been such a blessing and encouragement to me for which I'm so thankful.
 

 You may find some of what I write about uplifting, impertinent, boring, whatever.   But regardless, do know I am here.   Just a post, comment or email away.   We can bless each other.

JOY to you this day!

A Quick Surgery Update

I am thankful that February is nearing its end.   It won't be long before we start seeing some crocus flowers start popping up and exclaiming SPRING!  CANNOT WAIT!  Around here, January and February are usually unbearably cold and snowy and icy.   But like much of the country, Kansas City has been blessed with a warmer winter and little icy precipitation.   In fact, about the only snowfall we have had was on the day of my surgery - and it amounted to only about 1 1/2" inches and it didn't last long.   If it has to snow, that's my kind of snow!

It has been over a week since that snowfall and my surgery.   I had my one week follow up appointment this past Monday.   Bottom line, the pressure is still high.    According to my doctor, there is no major concern at this time.   I guess it's somewhat normal for the pressure to dip - like mine did the day after surgery - and then go back up until it starts to stabilize and lower after a couple of weeks.   But the pressure is higher than what is wanted at this stage - so I'm adding a "new" drop to assist in lowering the pressure.   Hope it works.   We find out in two weeks.     

As far as eye comfort, it has improved greatly in the past day.   A lot less soreness.  The red still exists, but fading away.  All of which I am thankful.  

A clearer cornea - meaning clearer vision - requires time and patience.   The pressure needs to lower first and then the cornea will get its chance to adjust itself.   I could read the first two lines of the eye chart on Monday so I can see.   It is fine and it will be okay.  My left eye is in good shape and seeing great - it's getting quite the workout.   Thank you above for the gift of sight in that healthy eye!  

I did spend a little time talking with my doctor about what was done in this surgery.  I found it very interesting and I will pass this on in a post in the near future.

It's nice to be a week out of surgery and starting to feel "normal" again.   My little family has had a series of nasty little cold / flu-like viruses over the past 3 or 4 weeks and they are basically back on the mend.    No planned surgeries, no coughing, sneezing, fevers, runny noses around the house?   Wow - it's feeling good around here!    

Keep smiling and LIVE your day TODAY!   

ICE - Glaucoma Tube Shunt Reposition Surgery

My surgery was Monday. Specifically, this surgery was considered a tube reposition surgery. Since I have three tubes shunts already in my eye and the pressure was no longer being controlled by the tubes in their current condition - nor by medication - for some reason, the tube located in my upper right eye was chosen to be repositioned. It was chosen to not just lower the pressure, but to also somehow stay away from my cornea graft.

The surgery itself was easy. More details on that in a future post. Recovery from an invasive eye surgery is never easy. Lots of soreness and other things - things I'm used to and things that just require some patience and time. I see the doctor on Monday to see how I'm doing. I'm hoping and praying for some good news.

As I learn more on exactly what was done, I'll take good notes and make sure to pass them on in hopes of helping others down the road.

Have a good day today! Live it!

I'll Be A Sunbeam

Sometimes my mind wanders excessively and I get easily distracted.  This week was no exception.   It all began by thinking of Pity Parties - you know the kind - the ones where "woe is me" is the theme.    I have definitely learned over time that I do not want, nor do I need, a Pity Party.     They sap our energy and they bring us (and others around us) down.

More wandering on a familiar topic...  We all have times in our lives when things don't go as we had hoped or planned.    Some events or life circumstances may be practically unbearable.    Life is difficult.    It always has been.   One minute/day/year everything is fine, the next minute/day/year it can be turned upside down.    (Of course, this is where I always have to remind myself and others - "choose your response").

I continued wandering.    I thought of the spiritual song "Nobody Knows the Trouble I've Seen" (recently brought to mind by one of my favorite commercials).    But wait, you must check this out!   How awesome is that performance in 1962!   Classic!   Just love that smile!   (oops, even wandering as I write!)

And then I started to wonder what old hymns have similar "living through troubles" themes.    Being a lover of nearly all things vintage - I dug into my piano bench trying to locate an old garage-sale-find hymnal.    I ended up finding the following ....

JOYFUL - I like that word!  Copyright 1932 - Vintage Love!   I flipped through its pages and landed on this song that grabbed my heart and mind....

There are actually two versions of the song - the other more popular - but I like this one by F.E. Belden best.   The first two verses go like this:

If I were a sunbeam, This is what I'd do -

I'd find the dark places, searching the forest through;

I would kiss the pale flowers, Bending low at my feet,

Till each lonely blossom Opened fair and sweet.  

So many dark places in this world of sin,

Why not be a sunbeam, Letting the love-light in,

God's beautiful love-light, Smiles and words of cheer;

Kindness is the sunshine We should scatter here.

Chorus:

Beautiful sunbeam!  God sent you here;

I'll be a sunbeam, *Lonely hearts to cheer.

*notation indicates other words can be substituted, e.g., Mother's heart; Baby's heart; Brother's heart, etc.

I so love this little song!  What started off as a mind wandering session ended up being a little life lesson.   YES,  I"LL BE A SUNBEAM!    WE ALL NEED SUNBEAMS!   No Pity Parties!   ICE or no ICE, giver or receiver, smiles and words of cheer can help us make it through! 

Wishing you many sunbeams of cheer today!