Monday, November 30, 2009

Day 12 Post Op

It has been 12 days. I am incredibly happy with my vision and my eyes. I still can't believe my eyes are almost perfectly aligned, so I keep taking photos with my MAC to remind (convince, assure, prove.) myself that they are indeed straight. Inside me still lives a crooked eyed woman and I am trying to get to know this new person.

I know I am still suppressing (not using) one eye. When I use my left eye my right eye drifts up and crosses in, but NOTHING like it used to. As for my left eye, it is almost perfectly aligned. When fixating on things right in front of my face, it crosses in a bit. The heavy lid makes the eye look a bit droopy, but apart from that, it is level with the other eye. I used to have eye brows that were on different levels, now they are even. A friend of mine asked me what the surgeon did with the bone surrounding my eye to make my face even. I told her that nothing had been done but changing the alignment of the eyes by pulling the muscles. She couldn't believe that rotating the eye made my sockets parallel. My eyes used to look asymmetrical, now they are even with each other.

The crossing could be due to the fact that the lens in the center of the computer screen and requires me to look inward, whatever the case, I am confident that I can learn to correct this in Vision Therapy. I can't wait to get back to therapy! I have been doing the Brock String Exercise every day now. I allowed myself time to recover for a week. The string exercise helps to 'turn on' my left eye and after doing it, I notice that my eyes seem to work as a team for a few moments. It gives me feedback as to where my eyes are looking which is helpful to learn the 'feeling' that I have when they are aligned, I can then try to coordinate them by recalling the feeling.

I am very happy with the results in so many ways. Something in my brain really likes my eyes being level. I keep getting this tingly happy feeling in my head all day long. Yesterday I was washing a pot. I got lost in the way the sponge rolled over the sides and the path the suds took rolling down the outer edges. This has been happening a lot, ordinary moments made captivating by seeing them in-stereo.

Friday, November 27, 2009

Before and After

Photo aken six days after my surgery. Very straight, very happy. What a relief this is!

Post Op Vision Updates - Car Rides and Being Visible

There is a 'fun house' quality to my entire visual field. It is very difficult to describe, but everything all at once seems distorted. Imagine looking through a drop of water. It would be clear, but everything would be slightly misshapen, sort of like a fun house mirror. Areas of things look more stretched out and other areas look more compressed. If a composer were to put music to accompany the way I now see things, it would be like a bouncy underwater echoy cacophony! I think of whales talking. Try this link and get an idea (add to this a synthesized sound and you have the sound track in my head!) For some strange reason, I am finding this sound very comforting. I realize this sounds a bit nutty ("A bit nutty?" you say) but this is what I am experiencing.

I was taking a bath the other eve and the doorway of the bathroom was completely tilted. I then noticed the mirrors along the opposite wall were leaning towards me. I asked my husband if he could put his head down near where mine was and tell me if the doorway looked crooked! He did, but didn't really see it. The other eve the dresser at the foot of our bed looked like someone chopped the legs off one side. It was slanted.

Being a passenger in a car is a completely different experience. It is though I am floating along and I feel the car travel through space. Within the car I feel myself hovering in a strange way. It is complete visual overload but absolutely fun! Unfortunately within about 20 minutes I am dizzy and sick with nausea and feel like everything is spinning.

I am still trying to get used to how to hold my head. I am only now beginning to realize how I used to tilt my head-especially when speaking to people. It is now a constant habit that while served a purpose when my eyes were looking in different directions, now only makes me dizzy. I am keeping my hand on the left side of my head to remind me to stop TILTING!

And here is something incredible. Yesterday at my family's Thanksgiving gathering, everyone was sitting in various chairs around the room. All the way across the room was my eight year old niece sitting on an ottoman playing with my brother's Spinone Puppy. There were other family members sitting near her and in front of her in a cluster. In the sea of faces, I was looking at her. She looked up at me from across the room and said something. I paused for a moment and wondered if she was speaking directly to me. I wondered how she could tell I was looking at her. I then thought that I would speak back to her to see if she was actually speaking to me, so I did and to my amazement she responded. I could not believe she actually knew I was looking at her. It will be the first time in my life that I looked across a room with several faces close to each other and the person I was looking at knew exactly where I was looking! I have never felt so visible. I realized I have lived my life having to gesture with my hands, or say some one's name directly to get them to know that I was trying to speak to them. This was so small and subtle. Now, just a glance in some one's direction all the way across a room and I am seen. AMAZING.

I have so many other things to report. Things are happening so quickly that I can't keep up. Scribblings on paper "lamppost slanted," "dog looks small," "grocery store less confusing than it used to be," "I see on both sides of me..." all over my house.

Wednesday, November 25, 2009

Day Seven Post Op

Since I can't really write on the computer for very long yet I am doing video entries instead. Time to say good-bye to my prisms! I don't need them anymore. You will see from the video that one of my lids is creased while the other is smooth. It is common for someone who has has Strabismus for so many years and has had a head tilt to have one eye that is smaller and weaker. The surgeon said that this can be corrected with plastic surgery, if I desire. I suspect that through Vision Therapy the eye lid will get stronger and lift up on its own.

I am very happy with the results of my eyes. My surgeon, Dr. Brian Campolattaro MD did an excellent job. Also my experience at Manhattan's Eye Ear Infirmary on 14th Street was outstanding.

The next phase is crucial and that will be learning how to use both eyes now that they are aligned. I will be going back to Dr. Carl Gruning to start my vision therapy again which I am very excited about. I know without Vision Therapy my brain will possibly misalign my eyes. I have become very comfortable using only one eye or the other for a over three decades, if it can ditch the two eye system I know my brain will try! So, just as soon as I am healed, I will begin the therapy. Imagine having knee surgery and then never going for physical therapy? It would be insane. Well, what is the difference with eye muscle surgery?


Video taken day of surgery.

Tuesday, November 10, 2009

Good-bye to My Eyes

I am changing it up a bit. I wanted to share a video I just shot about my Strabismus and upcoming surgery.


Thursday, November 5, 2009

Time for Surgery

I have been doing vision therapy for about 14 months with Dr. Carl Gruning. When we first met he said that I would probably need surgery, but thought some therapy might give me a better sense how to use and direct my eyes.

About 3 months ago I began to get double vision. First it started with television at night. One evening, there was another television in my dark bedroom. While I was a bit creeped out by this, I knew from all the therapy I had been doing that this meant that BOTH my eyes were working simutaneously. It gave me hope that I would be able to learn how to fuse the images together into a spectacular 3D world! After the TV, other things began to double up; people's heads, pictures on walls.

I brought this information to my next vision therapy evaluation. Dr. Gruning said, "If you are ready Heather and you feel you want to do this, I think it is time to see the surgeon..." I was a bit disappointed. I guess wanted him to say something more like, "Heather, you are now healed!" But throughout the 14 months of vision therapy, I always knew that surgery might be a road I would have to consider given the extent of my misalignment.

I had the surgeon's phone number on a tattered business card in my wallet, carried around with me for a year and a half since Dr. Gruning initially gave it to me. Over the months I took it out a couple of times to look at it, Google the surgeon's name or whatever, but I always ended up tucking it back in my wallet.

After my visit with Dr. Gruning I put off seeing the surgeon for a few weeks and the weeks turned into months. I wondered what I was supposed to do next. I thought of all the options; I could just return to my one eyed seeing (intermittent suppression), and stop doing the exercises, stop wearing my prism glasses and say good-bye to the magical 3D world I visited while wearing my prism glasses. Or I could go to this doctor and see if I was a candidate for surgery. I didn't know what I was going to do. I started to understand that more vision therapy would have probably meant more double vision, which was not a great option.

I decided to go and hear what a surgeon might say. I had reached the point where I felt completely ready to hear any answer. If the doctor said, "I am sorry, there is nothing I can do for you..." I can sincerely say, I would be fine with that and was prepared that this might be the case, as my first two surgeries left me with extensive scar tissue. Perhaps there is too much damage, or I am too old.

Two weeks ago I went into Manhattan and met with the eye surgeon. After a very long wait surrounded by cross eyed children throwing saltines in my hair, and an evaluation by one of the surgeon's associates, I finally met with the man who's number I had carried around for so long. I walked into his office and the first thing he said was, "I got two years on you..."
"I'm sorry, what?"
"I am two years older than you..." he said.
This gave me a laugh and I liked the fact that he was young. After a few questions, he looked at my eyes and with a look of kindness he said,
"Heather, you don't need to be walking around with this, I can fix your eyes."
A heavy feeling was lifted from me when I heard these words and tears came rolling down my face. As our visit went on and we discussed my condition, the risks, the benefits, and what to expect. I realized that not only was this an amazing surgeon, but also a pretty cool guy. He told me about doing pro bono work on adult strabismus patients in the Dominican Republic and told me that he loved what he did for a living.

I don't really know how to explain this, but as we spoke I felt as if I knew him already. I was instantly comfortable in his presence. It was as if he was waiting for me to walk into his office that day. It was a very weird feeling, but also comforting, certainly not a feeling I ever had with any of the other eye surgeons I have met.

I asked him,"If one of the top surgeons, Dr. Philip Knapp couldn't fix my eyes, what makes you think you can?"
"Heather, I have one thing that Dr. Knapp didn't have..."
"Really, what is that?"
He went on to explain that almost everything was different with the procedure-from the anesthesia to the actual surgery, it would be very different from what I experienced as a child. When I questioned him further about the technology aspect, he said that a few hours after my surgery when I woke up there would be strings left hanging out of my eyes and he would pull the strings and continue to align my eyes after I was awake! Gross as it sounded, I was amazed that they could do this.

I booked my surgery for the 18th of this month at a prominent hospital in NYC. I have not slept very well for days. First I was excited, then the fear began to sink in. "Your face will be completely different..." I remember the surgeon saying and now it echos in my head as I toss in bed. I am changing not only the way I look, but also I will have to learn to use my eyes all over again.

I called Dr. Gruning to thank him for referring me to this surgeon and told him that I am booked for surgery. I heard in his voice that he was excited for me. He knows how long this road has been. Before we ended our conversation he said that I would start up vision therapy again after I healed.

Today while walking in the woods, my brother Peter spontaneously picked up a pile of leaves held them to his nose he said, "Everything is different now, but hundreds of years ago people still smelled this," while taking a big sniff of the dried leaves falling from his hands. It made us all laugh. It must run in my family, this thinking back to other times. I think about my Strabismus in this way sometimes. Would I have been an outcast hundreds of years ago because of it? Probably.

I remember seeing a movie called Precious Bane where the woman had a hare lip and was outcast from her small village in England. It starred the brilliant actress JanetMcTeer, who I also saw in Ibsen's Doll's House at the Belasco Theater many years ago. You can see a clip from the movie here. I highly recommend it! Why am I thinking of this movie? Thoughts are careening around my head these days. Prue, the character in the film was outcast because it was thought that she was cursed by the devil. Would my strabismus have brought me the same fate in 18th century England? Perhaps I would have been stoned to death for being a cross-eyed witch.

Here I am, 43 years old having lived long enough to go through one era of medicine and now about to experience a new advanced, miraculous version. It is quite amazing. I would guess it would be like someone living with a prosthetic limb and then getting older and suddenly getting to experience a new advanced limb. Thoughts like these are running through my head, all colliding and advancing. What does it mean to change the face you have known for so long? I will soon find out. What my parents wanted so dearly for me as a child, I soon may be able to capture...straight eyes.

Last night, I dreamt that I was slowly falling asleep after being injected by the anesthesia and a fell deeper and deeper and deeper until I was gone. Poof. The night before I dreamt I awoke in the middle of the surgery while the surgeon was cutting and tugging at my eye muscles. I am very stressed out, but also peaceful, knowing, absolutely knowing that this is the right path.