ICE SYNDROME SYMPTOMS SUBSIDE!

 The past 16 months have been rough as it relates to ICE Syndrome....2 cornea transplants and 2 glaucoma tube shunt revisions, and 1 tube shunt removal with ECP.   Honestly, it has been ROUGH and it has been TIRING.   Days laying flat on my back looking at the ceiling, high pressure aches, stabs of pain, headaches, double vision, clouded blinded vision, various cocktail of eye drops that sometimes create undesirable side effects, swollen red eye and on and on.     I am very much in the middle of this ICE stuff and it tries to take my "life" away.   I try so hard for it not too - but sometimes it just can't be helped.    Sometimes also, it feels like it just paralyzes me into inaction.  

But life does go on.   In those 16 months, my dear son went from a third quarter 4th grader to graduating out of elementary school.  Where does the time go - so MUCH I wanted to enjoy - and only feeling up to being able to do a LITTLE.     Still able to encourage and sometimes prod, I wanted to do so much more.   Sure, I went to parent teacher conferences, cheered at sporting activities, went to plays & ceremonies - but as I look back - did I really get to enjoy them as much as I could?    Did I savor the moments?   Could I have done more?    I enjoyed - but it seemed like ICE was at every nook and cranny trying to knock me back.  

My appointment on Monday was decent.    In the past two weeks, my pressure dropped to an acceptable level....between 17 and 21.   I had remaining sutures removed - which is helping stop the excessive thick watering.    There is still cloudy vision and double shadow vision - but that is a new normal now and one that I'll live with for a long while if I can.    I just don't want to hit the surgery table anytime soon.   Can I really start living again?    It's summer - can I really enjoy it?    Can I savor the moments this summer with my son before he hits those middle school years?   

One thing is for sure - I'm going to give it all I got to make it happen.     My new command:  "ICE symptoms subside - I have more important things to do right now!"

The ACHE and When Eye Pressure Just Won't Stay Down

It was just four weeks ago when I had my tube shunt removal - and some laser zapping of cells that make aqueous fluid.     Day One after surgery - eye pressure was 9.    One week after surgery - eye pressure was 11.   Beautiful! 

Late last week I felt a couple of little twinges on the inner upper quadrant of my eye & eye socket....I'll just call it "the ACHE".    I really didn't think much of it - although I did wonder if perhaps it had to do with sutures from surgery or some other little complication of surgery.   My three-week surgery followup was earlier this week and I mentioned "the ACHE" to the tech and my doctor took notice of the note in my record right away.    Observing the physical condition of my eye - nothing was really out of the ordinary - just my typical corneal edema.   

And then it was time to measure the pressure.   It seemed a little quiet a little longer than normal and then my doc asked the technician to bring in a pen to try to get a different reading.   I'm thinking "uh-oh".   And yes, in fact, in two weeks time my pressure jumped from 11 to 27.    Unexpected and disheartening to me.   27 was essentially the pressure that got me into surgery - and now - just after one month after surgery, I am back to where I started - less one tube shunt in my eye.   A still swollen cornea, high pressure, double "shadow" vision.   Ugh.   I guess I can celebrate that I have just two tube shunts, not three - so my eye just doesn't feel quite as full.  

I then remembered "the ACHE".    In all of my over-zealousness that my pressure might be getting under control, I had forgotten the true meaning of the "the ACHE".   You see, over all the years, "the ACHE" has been the warning signal that my pressure has climbed or spiked.   To what, I never know.    But in this case, my eye was telling me, that the pressure was not staying down.    

If you have ICE, take note of what you're feeling.   KNOW YOUR EYE.    I can always tell when something is not right.    Oh - so many times - I just wish someone would confirm that I am imagining "the ACHE"!   But so far, I have been right most of the time.  

So the plan of attack - drop down to one steroid (Pred Forte) drop per day (I had already tapered down from three to two drops/day) because the steroid drops to control the inflammation & potential rejection of the cornea transplant can cause increased eye pressure.   Add an additional drop daily to my glaucoma medication - in this case Xalatan with my ongoing twice a day Cosopt.    I see the doc again in two weeks.   We'll see.

So in this mystery of a disease & its complications, I'm continuing on through the journey.   So many things to try to correct - and so many variables to deal with.   Honestly, I just need a little break and a little good news for a little bit longer than two weeks. 

Oh well, I have been so busy with life - that I'll just try to push this aside until I have to face it again in two weeks.    In the meantime, I will live life today & tomorrow & the next, & next.........      

Game of Cards - Game of Life

In my last post, I mentioned I ventured to have a garage sale despite having surgery a week earlier.   In my down time as I waited for customers, I grabbed a book off my bookshelf entitled "The Old Farmer's Almanac Sampler".   It consists of quotes and advice that was published in the annual periodical throughout the years.    Appreciating the wisdom and courage of the generations before us, I really enjoyed perusing through this book. 

I was drawn to one particular quote that I felt was so appropriate as we all deal with life's little struggles and ailments.   It is from 1907 and is attributed to Josh Billings:

"As in a game of cards, so in the game of life we must play what is dealt to us; and the glory consists, not so much in winning, as in playing a poor hand well."  

Ahhhh, there is that attitude thing again.   The triumph is all in how we CHOOSE TO RESPOND to whatever life give us!    This has been a lesson of the ages - but one that we must be reminded of often.  

LIVE TODAY!  CHOOSE JOY!  ALL IS WELL!

Springtime! Time to LIVE it!

Whew...it's the middle of spring - it's been almost two weeks since my "tube shunt removal" surgery - and no update!    A little on that later. 

First of all, within the past week or so I have received a couple of comments from new fellow ICE readers.  Thank you & welcome!   I'm so glad you found this site.   After years of me feeling alone battling this ICE thing, I created this blog in hopes that others diagnosed with this disease, might find it and know they are not alone.    I don't have answers - but I have feelings and thoughts and sometimes I share how I deal with it.  It's my form of therapy!   Please know, I always welcome your comments and thoughts - because it helps me too - knowing that I'm not the only one out there!  Through this blog, I know of at least six of us ICE patients - plus several friends who check in every once in a while.  Thank you everyone.

Second, it is springtime - and that means multitudes of activities and things to do!   I really don't have the time, nor the desire. nor the energy to deal with surgery recovery and follow-up doctor appointments, let alone the every day nuisances from this disease - but I must.    But I MUST ALSO LIVE TODAY - LIVE THIS SPRING!    SO just a couple of days after surgery, I went to a couple of games of my son's baseball tournament.   Fortunately, two games were during daylight hours - so sunglasses "hid" the evidence.   One game was at night - but I bared all - swollen, red, teary eye, no eye makeup - just my glasses.    It wasn't pretty - but I was LIVING and enjoying my family - and quite frankly, that's all that is really important.    Even last week, I held a garage sale in my neighborhood garage sale event.   Once again, it wasn't pretty - but I got rid of stuff, made a little cash and LIVED!    There are end-of-year school activities, middle school transition activities, more baseball and soccer, gardening, more of lots of things.   And I want to LIVE them!  

Okay, finally for the update on surgery.   It went fine.  It was a tube shunt removal in the lower inner quadrant of my eye with more patch grafting (ugh!) and an ECP to zap some of those fluid producing cells to try to control the pressure.  My doctor said he was very glad that the tube was removed - for it wasn't doing any good - except cause trouble.  As mentioned earlier, my eye was very sore for a few days and there has been lots of tearing probably due to the sutures.   The good news is the pressure was "9" the day after surgery and "11" one week after surgery.   The "not-so-good news but need to give it more time" is the cornea is swollen (but it was like that before surgery), I'm still experiencing those "double shadows" which is frustrating, and personally and honestly, I'm struggling with the way my eye looks.   I have more I want to share - but I'll leave that for another post.   

Remember....

LIVE TODAY
LIVE SPRING
CHOOSE JOY 
 
We may need to remind ourselves often, but that's okay!    

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!