Round Three

Can I start off talking about something other than my eye for a quick second? Last week I had an amazing opportunity to assist in teaching 150 wounded warriors from the US and Great Britain how to ski down a mountain no matter the disability. It truly was a miracle on a mountain side! The spirits of these young men were not broken but instead they soared 12,000 feet high in the form of skiers and snowboarders.

I was able to teach Jake to ski better on his one leg then I could on two!!!

After an amazing week in Breckenridge, CO I flew to Boston for a follow-up with Dr Fay. Early Monday morning, before the coffee started brewing and the computers started running I waited for him in a semi-lit waiting room. As I was waited and waited, the once fresh coffee became cold, all the computers were now running at full speed, the lights now illuminated every corner of the room, and voices from the other patients filled the room and yet still no Dr Fay. Eventually one of his fellows came to get me and explained to me Dr Fay got pulled away and was unable to see me today. Just the news I was expecting to here... hahaha not really. However she did go on to tell me that surgery had already been planned for the 12:00 the next day. You see, I am beginning to think that Dr Fay has well surpassed the stage of being a human and is now super human. His ability to know what to do without even seeing my eye in the last 2 months is beyond amazing.

Headed under the knife again!!!

The next morning, I rolled off Jenn Morrells couch and headed to Massachusetts Eye and Ear Infirmary. As I arrived, the familiar faces started to appear. There was Joan sitting at the front desk being her typical happy self, immediately making me feel at home. As they called me back there were yet more familiar faces  smiling and welcoming me. Marianne and I were able to get caught up a little on life before the twelve members of the Fay Crew started rolling in. Each looking at my chart but not saying much.  Once I had been rolled into the OR it was then that I was finally able to "talk" to him.  I put talk in quotes only because I had about two minutes before everything he was saying would become a big blur. I stopped him mid sentence and said "you know what, I am headed to bed but I will talk to you later" and out I went. Upon waking up the familiar faces were back. Two of the kindest nurses where there assisting me as I awoke from my slumber. Fresh perocet, apple juice, and crackers where there waiting for me. I must say its not always easy going into surgery by myself but when I know there are prayers out there and amazing people inside it comforts me more than you will know.

The two angels Sylvia and Katie

So it turns out that some scar tissue near the lacrimal sac started to slip from under the lid and needed to be removed as well as separated from the eyelid. This should be the final separating process to take place under the knife. Dr Fay also took out the symblepharon ring and put in a full large contact lens that will provide more spacing and less of a chance for anything to slip or stick again. I will head back up for the follow-up in a couple weeks. He wants to keep the eye sown shut a little longer than normal for more healing time. I would go ahead and state what the next step might be but I am not even going to guess. Its all in the hands of the Big Cheese and the Even Bigger Cheese!!!

 

Milestone

Well guys not much to say on this one. My day started with a 12:30 am  drive to Charlotte and ended 18 hours later with me sick as a dog on a friends couch in Boston. Everything in-between was just a big long blur.

THE PROCEDURE

There I was, sitting in a sterile room, listening to Tchaikovsky, Bach, and Gershwin do what they do best, help me relax.  It started with the doc using "numbing drops" to alleviate the pain. As he poked and prodded at my eye I would unexpectedly twitch or jump each time. He asked if I was nervous and I just said "no, it just might be a little tender". Maybe its just me, but there is something about watching an instrument come towards your eye and when contact is made I would think it would make anyone a little jumpy. Its like watching a gnat fly into your eye and just letting it walk around on your cornea without blinking or twitching........just doesnt seem natural. Anyway, once he started getting deep into the pocket of the lid the pain began. It was clinched teeth and deep breathing from then on out. I would like to think that my pain tolerance is now at a whole new level! "Almost there" he said. Just at that moment he took a needle to the eyelid to numb it enough to place a deep slit to access more of the eye. Out came the piece of silicone and in went a symblepharon ring. This is like a giant hard contact lens with a hole in the middle of it. It was placed there to keep the spacing that was developed between the eyelid and the eye and to keep the lid from adhering back to the eye. This was never an option before. 

the symblepharon ring

As I wiped the blood from my eye I looked up to see that Dr Fay was still in the room. He was not only still in the room but he was giving me a pep talk. He talked about how we had hit a milestone today and that we would be able to move on with manipulating the eyelid itself. We talked about that up until this point if I would have had an enucleation the orbit would not have been able to support a prosthetic and I would have had to have an orbital exenteration. We talked about what other procedures might look like and how much more he can do to help save the eye. We are both uncertain about the outcome but at the end of the day we want to walk away knowing that we did everything possible. 

Whats Next???

He wants me to go back up in a month to see how the ring is working and how the eye is healing. If there is something that he wants to do immediately then he will throw me in the OR the next day. Until then its the continuation of prayer, the saving of money, and the dreaming of skiing as winter nears!!! 

Interactive Part!!!!

 For those of you unsure as to what an enucleation and an orbital exeneration is I would encourage you to look it up on google and defiantly check out the images that are wicked cool. (did I just say wicked? I think I am spending too much time in boston) I thought that if I posted some of the images I might lose some of my readers!

We love to fly and it shows!!

This morning, after crashing at a friends house in Charlotte (stacey "the amazing" backstrom) I jump on a plane and headed to boston for the big results. The people at Dr. Fays office really are a great group. When I arrived I immediately got the general work-up with a new resident and then sat waiting anxiously for the man of the hour to walk in. When he walked in he was his normal self asking questions like "how does it look?" when really he is the only one who will be able to tell. He goes on to tell me that  the spacing between the eye and lid (fornix) looked really good. However the silicone that he sutured to my eyelid never slid out but instead sank back into my eye. The pain to remove it would be to much so he will need to put me under local anesthesia to take it out.  Mixed emotions were flooding around inside of me for sure but this was neither good news nor bad news just news. Dr Fay in his own way referenced his response from the letter. He talked about how he knows I am looking for answers and he is still determined to give it his best shot. It was very comforting to hear those words to say the least.

     So its off to the surgical coordinators office to schedule yet another procedure. I knew that there were going to be a couple more operations done but since I have hit my out-of-pocket deductible I was hoping to get in as many procedures before the end of the year as I could.  After talking with my favorite surgical coordinator she snuck me in a spot next thursday! She said "they might not be happy about it but you are one of my favorites and the real next available is in December!" So for me its back to booking flights and building up those sky miles!!!

                                                      Made it to Boston in a single bound

Rough Recovery

The recovery from surgery was a little tougher this time around.  For the first week every movement of my eye would be excruciating. I spent a lot of time in prayer because my eyes were closed most of the time. My Aunt did the best she could with me under the circumstances. I was unable to enjoy walks on the beach and explore New York so instead my aunt had a little birthday party for me at her place and invited over some of her friends to cheer me up. Percocet did not work for the first couple of days but after a couple of days and doubling the dose it soon became my best friend. The days before leaving went much better and I was able to enjoy some of the time with my aunt and the incredibly cool Fitzgerald family who provided me with some great dinners including the best pizza in New York! The day before my follow-up I went and had an amazing crab and lobster dinner overlooking boston and the harbor with my good friend Jenn Morell. The live music for a tuesday night made us laugh because of how bad it was but the food was great and the company was even better. The next day I hoped on the T and headed to my follow-up. Dr Fay described to me the procedure that was done. Basically he took an artificial amniotic membrane and draped it over a piece of silicone. He then took that piece of silicone and sutured it as high up into my eyelid as possible in hopes that it would keep the eyelid from re-adhering to the eye. He said that it looked good and only time would tell. I got back to Augusta Thursday with minimal pain and work was fine that day. However, the next morning was one of the most painful mornings I have ever experienced in my life. It literally felt like someone had torn off my eyelid, poured alcohol all over it and then took the palm of their hand and tried to push my eyeball into the back of my head. It took everything I had to get in the car and make it to the E.R. I ended up going to a optometrist friend of mine. I was able to be seen immediately and was given multiple antibiotics and steroids. They are not sure what it was but all that really mattered was that the pain had been relieved. I am still taking percocet to take the edge off which has been a huge help.

My New Best Friend

 I am headed back up to see Dr Fay on October 20. We have gotten to the point that if recovery goes as planned then we will move to the next stage, however, if this procedure did not work then there is nothing else he can really do. Either way I am not giving up!!!!

Round Two

Okay so I am going to try and make this blog as coherent as possible while I enjoy the pain pounding on my eye. After all pain is weakness leaving the body right?

The flight into Boston went smoothly and I could not wait to get round two of "Operation Eyeball" on its way. I met up with an old camp sunshine friend Jenn Morrell for a good dinner, great conversation and an amazing place to sleep. On the day of the surgery  I tried sleeping in pretty late in order to avoid hunger pains. I had not eaten since 9:00 the previous night and was not allowed to consume anything until after the surgery which in total was about 24 hours.  Upon arriving on the 9th floor I was taken back right away and was actually called to the OR an hour early. I met some of the same sweet people that remembered me from last time which made it much more enjoyable. However then drama walks in the door. In comes the doctors Fellow making rounds with a Resident. I have still yet to figure out why these medical professionals inform their students more than the actual patient on details of the surgery but perhaps I will never know. Anyway his Fellow comes over to me, looks at my eye and discusses a plan that I had never heard before with the resident and then walks off to see the next pt.  Soooooo come to find out the plans had changed. 

Originally Dr Fay was going to remove fat from my stomach and place it in the orbit for more structure followed by releasing the upper lid by another 10mm and separating the lower lid from some of the adhesions. Unfortunately, I thought I felt something different this past week, but my eyelid had started to fuse back to the eyeball after the first surgery. So now the new plan was to continue with separating both the upper and lower eyelid as much as possible and doubling up on the artificial amniotic membrane to hopefully prevent further adhesions.  

From what I have heard things went well. They stitched the membrane in the top of the eyelid and pulled down the full eyelid in hopes to stretch and form better closure for it. I will let you know how it turns out next wednesday. In the mean time I will just be enjoying time with my aunt in New York and trying to alleviate this pain. My eye feels a lot more painful this time around but maybe thats a good thing. Thank you all for your prayers and kind words. I know HE will continue to work in my life no matter what the outcome is. 

A LARGE bump in the road

It was decided upon that another follow-up appointment needed to be made in order to once again view the   current recovery status and discuss the next steps. I decided to fly up to Boston in the morning see the doctor and fly back that same day to save a little bit of money. When I arrived to Dr Fay office I was seen right away which was very refreshing compared to some of the other waits. However after talking to Dr Fay I quickly went from having hope to having nothing. I think it is better explained in a letter that I sent to him a couple of weeks ago......

Dr. Fay
   
       Thank you for taking time to read my letter. Upon visiting you June 2, 2010 I was hopeful that you were going to be able to help restore my eye and once again make it pain free. This was incredible news due to the pain I have been living with for over 18 years now.  From all of my findings and research you were the only doctor that seemed to have any promise of relief and/or healing. 
 
The doctor that sent the recommendation to your office stated in his letter that if my eye was unable to be completely restored then my next priority would be to relieve my pain. When I flew up to visit you I relayed the same desire to first have the procedure to allow my eye to fully close and then once those results where achieve to move onto a cornea replacement.  I also relayed the desire to not have my eye sewn shut as it seemed there was great promise in your ability to perform a procedure that would allow this healing and proper closure of the lid to be accomplished. With the plan that you explained to me you led me to believe this could all be accomplished.    
 
The surgery went well, even though the visit was not what I had expected. The busyness of your practice ( due to your incredible demand) was a bit dis hearting in terms of follow up care and attention to detail. I am not sending this to suggest how to run your practice; I am merely noting the experience that I had. All of these experiences did not however diminish the hope that was given to me by you during our first meeting and your optimism regarding my case. 
 
After the past visit on August 5, 2010, all hope you had given me was quickly snuffed out by the details of the visit.  You stated the procedure you did looked great and that I should now talk with the cornea specialist. However our conversation from the beginning has revolved around 1st, restoring my eyelid  and 2nd to relieve the pain, however necessary.  Your response to move on to the cornea specialist  I found to be surprising as my eyelid did not fully close, as this was the basis for the entire procedure performed under your care. 
 
Towards the end of our conversation you mentioned an option that had never previously been mentioned, which was to have my eyelid sewn shut. This could have been coming from multiple angles as I know your extremely busy and have a million conversations and projects going on at one time.
 
At this point my future dreams and visions for what can be, rest upon our initial meeting and the hope that was relayed by your expertise and suggestions.   I have made three trips to Boston so far and am willing to make more if necessary to properly accomplish what we discussed in our initial meeting.  Do you feel that we can achieve the outcome that was discussed in our first meeting? As far as the option to have my eye sewn shut, that could have been accomplished by making the 2.5 hour drive to Atlanta. Thus consequently rendering all of my time and money that was spent on this endeavor useless and wasteful. 
 
With great appreciation to the hope you instilled.
 
Eric C. Gray


Much to my surprise, I received a response within a couple of days...

Dear Eric, 

Thank you for taking the time to write such an open and honest letter.  I first would like to apologize for my own shortcomings and any perceived shortcomings of my office organization.

As far as restoring vision to your right eye, I understand the priorities are to reduce or eliminate chronic pain, and to restore vision, all without having to close the eye.  At this point, I have NOT given up hope that we can indeed accomplish these goals.

I am pleased with what we accomplished in stage I.    At the outset, i had envisioned a single-stage eyelid reconstruction that could be followed soon thereafter by cornea surgery.  After hearing from Dr Chodosh, however, I realize that the cornea procedure will require even better eyelid coverage that I had first anticipated.  Although we were able to create a space between your eyelid and eyeball where they were fused previously, The eyelid still does not move enough independently to close the eye.  Therefore, in order to prepare the eye to Dr Chodosh's satisfaction, we will need additional eyelid surgery.

A complex problem like yours should be evaluated continuously; we are not limited to our initial evaluation and plan.  As the situation changes, so can our goals and plans.  As we proceed through each stage of evaluation and treatment, both you and I become more educated about your eye, what is achievable, and what it might take to reach the desired goals.  Fortunately, we have not lost any ground, and I think we have indeed moved closer to our ultimate objectives.

I understand the emotional, physical, and financial stresses you are experiencing.  Only you can decide how much you want to invest in this process.  What I can do is help to advise you so you make reasonable choices, and so you understand the possibilities.  No doubt, your case is complex and difficult, which is why very few doctors will accept these challenges.  NEvertheless, I believe we can improve your condition and I believe we have a reasonable chance to reconstruct a painless eye, possibly with meaningful vision.

Again, I am sorry to have fallen short of your expectations.  As long as you want to, I will be here to work with you.  If we get to the point where I cannot improve things further, I will surely tell you so.

Sincerely,

Aaron Fay, MD

I know what you are thinking!!! Thank GOD!!!!! So needless to say I am headed up to see him September 14th for the next phase of "Operation Eyeball"

THank You all for keeping me in your prayers. The love and support is truly felt! I know the Lord has great plans for my life and I am looking forward to seeing what is next!

My first procedure

In layman terms the first part of the procedure consisted of separating my eyeball from my eyelid because of the scaring that had developed and fused the two of them together. The second part of that procedure is where they take an artificial graph and place it over the scaring to assist in moving the eyelid and to prevent it from fusing back together again.

One early morning in July I arrived at Massachusetts Eye and Ear Infirmary ready for phase one of "Operation Eyeball". Everything went fairly smoothly in the beginning. I met with the OR nurse, multiple anesthesiologist and other medical students there to observe. The only thing missing was Dr Fay. They decided to role me into the OR and assured me he would be arriving shortly. After waiting in the OR on the table for ten minutes Dr Fay walks in tells me they he is doing general anastasia instead of local and thats all I remember. I am not sure if its because Harvard Medical is attached with this program where they feel that things can be done however they want because they are the best at what they do but I feel that a lot of professionalism was lacking that day. Upon waking up there was not a single face that I recognized and nobody around to tell me how the procedure went. I found this to be very upsetting but still being half awake and doped up I just let it slide. My wonderful Aunt Lisa from New York came and picked me up with my cousin Greg. On the way home I was very nauseous and threw up twice. I would have expected Mass Eye and Ear to have put some anti nausea medicine in my IV before I left but once again they let me down. The next day I was finally able to get a hold of my doctor and find out how things went. He assured me that everything went smoothly and that he could not be happier with the results. After hearing this all of my frustration with the whole procedure just slipped away and I found myself with the hope of being one step closer.
        In the following weeks leading up to the follow-up appointment I was able to recover on the beaches of New York under the care of my loving aunt and cousin. Days consisted of longs walks on the beach to find my cousin life-guarding down of 42nd and wonderful evenings with my aunt and her amazing puerto rican cooking skills! When all was said and done I returned to Boston for the follow-up. Meeting with Dr. Fay was again very encouraging. He viewed his worked and stated that it is continuing to heal quite nicely and that it could not have gone any better!   I was on my way to a pain free eye!!!!!

Off to Boston!!!

The time was set and now it was just a matter of making it up to Boston to visit Dr. Fay. I ended up deciding to make a road trip out of it and along with me came Maggie. She is a great friend and ended up being a pretty darn good back-up driver for the trip. After visiting a couple of friends along the way up we had finally made it to Boston. We got there a day early so we ended up staying at the La Meridian in downtown Boston thanks to the generosity of Mike Statham and Family! The morning came early and I was nervous and excited find out what could be done. At this point I would have not even minded enucleation as long as it would remove the pain. After waiting hours upon hours as usual in a doctors office and after meeting with a tech, aid, resident, nurse and fellow, I finally had the opportunity to meet with Dr Fay. Within ten minutes a plan had been developed to relieve the pain and possibly restore the pain. I had now been given hope that I could soon live a life without constant irritation. The return trip was full of joy as well. I was able to visit my Aunt in New York, spend quality time with my Grandmother in Maryland, see my cousins new beautiful dentistry office and do some crabbing and sailing with Uncle Em and Aunt Linda! Things could not have gone much better! 

Up to speed with my eye

As you all know I have been living with pain in my eye for the last 18 years of my life. After moving to Augusta 2 1/2 years ago my eye has increased in pain and irritation.  My famous "blue refresh eye drops" that I am sure you all have either in your car, house or some other random place started to no longer work. I have decided that this is the year to put an end to it all.  Six months ago a good friend of mine Erin Schmidt assisted me in finding a doctor in Boston, Massachusetts. Dr Aaron Fay has quite an extensive background working with people with my same situation! check it out!

Medical School	Columbia University College of Physicians and Surgeons
Residency	Columbia University, Edward S. Harkness Eye Institute
Fellowship	Harvard Medical School, Mass Eye and Ear (Ophthalmic Pathology)
Fellowship	Harvard Medical School, Mass. Eye and Ear (Ophthalmic Plastic Surgery)
Teaching Affiliation	Assistant Professor in Ophthalmology, Harvard Medical School
Biographical Profile: Clinical Interests Clinical Interests: Periocular vascular tumors, tear duct surgery, eye socket and orbital tumors, eyelid reconstruction, hemangioma, lymphatic and vascular malformations After contacting the doctor the it was time to collect all of my records from my past and get in to see him. This would have been a very tedious and frustrating process without the help of Lauren Brown. At the time, Lauren was working in a clinic where she was able to get in touch with doctors nurses and collect records that I would have otherwise never been able to do. Once everything was in place it was time to take the next step and head up to Boston.