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.