Still Here, No Surgery

I stopped posting on this blog at the end of 2007. It's hard for me to remember all the events in order that delayed my surgery and put all of this on the back burner...again. I'll try to reconstruct that at some point soon.

I plan to start posting again, to renew my interest in pursuing the surgery. So if you've been checking, or recently found me through a forum, please start checking back for regular updates.

Strabismus and Fragile X OR Another Reason I Want Corrective Surgery

In my post 26 Reasons to Get Eye Corrective Surgery I listed as #3:

My character and intelligence should get a fair chance to speak for themselves.

Strabismus is often associated with lower intelligence. It's usually a subconscious perception, but nonetheless. One reason for this is because strabismus is linked with Fragile X, or in laymen's terms, a common cause for mental retardation. So on some level many of us associate crossed eyes with mental impairment.

Of course the minute any of us who do not suffer from mental deficiencies open our mouths, that notion is dispelled. Still, it is a valid reason, one of many, to want to have strabismus corrected.

How much does this really affect someone else's perception of me? Consider this from Negative social bias against children with strabismus (2003):

"Strabismus might also be a handicap from an educational point of view. It is particularly interesting and important to note that children with strabismus may not be given the same opportunities as others at school. We demonstrated that teachers have major preconceptions regarding the performance of strabismic children. They believe that these children may not be as capable of learning as 'normal' children and may not be able to fulfill responsibilites given to them. Besides, they prefer to assign duties to 'normal' students during cultural activities at school. These results strongly support the suggestion that strabismus may potentially have a negative impact on a child's education."

While it's true that many adults go on to overcome such bias, they no doubt are continually facing a subtle, and biologically wired pre-judgment at the perceiver's sub-conscious level.

Status Update

So, yeah. Apparently it takes my insurance company a month to send me a directory of potential surgeons that they will cover.

It's hard to give you an exact update. Boston Children's Hospital Boston has been as helpful as they possibly can be. A surgeon there is going to review my list of potential surgeons that are IN my network and we'll go from there.

Stay tuned.

New News is Good News

We interrupt this regularly scheduled blog to bring you some GOOD news.

The blog gods have shined down on Blue-Eyed Super Strabismus Girl. An angel and compadre stumbled across her blog and passed it on to someone of influence and extensive experience. When we asked Blue-Eyed Girl how this made her feel, she had this to say:

I've been so surprised all along at the response I've gotten to this blog. I've had lots of people share their own fears, struggles and triumphs with me. People don't understand how deep the effects of this condition go. And yesterday? When I got this amazing email from someone who wanted to help? Yeah. That was really inspiring.

Blue-Eyed Girl wouldn't reveal who the two helpers are, but we can all be reminded that goodness still abounds in this world.

Strabismus Surgery Before and After Photos - A collection of websites

Yes. I am still here.

No. I haven't had the surgery yet.

My life has been taken over with other various and assorted chaotic events and higher priorities. Organizing this surgery takes a lot of time, as I found out the first time around. Phone calls, consultations, paper-work, physicals, more phone calls. But I'm clearing the deck so I can dig in for round two.

In the meantime, I noticed that a lot of people find my blog when they are searching for before and after pictures of strabismus surgery. I remember trolling the internet for before and after surgery photos when I was starting to think seriously about this surgery. I wanted to be sure that battering through my fear was going to be well worth it. There weren't a lot of pictures then. There aren't a lot of pictures now, and one could spend hours in Google looking for such pictures.

Here I'm compiling a list of links to before and after images of strabismus surgery. If you're visiting and you've stumbled across some good ones I don't have listed here, please share in the comments. For now, here are a few to start. I will add to this list as I find more.

Scroll over before pictures to see the after images for 5 types of eye alignment surgeries.
http://www.pedseye.com/treatment_results.htm

This site has a series of five before and after pictures, mostly of infants and children. One adult case is featured.
http://www.straighteyes.com/beforeandafter.htm

Only two pictures, but a nice simple explanation of surgery.
http://www.mypedeyedr.com/StrabSurg.htm

Takes you through the stages of eye muscle surgery. Only one before and after picture, and it is not clear if it is an illustration or an actual person.
http://www.dhmc.org/

I'm Neglecting You and Myself

Hi. It's me.

I haven't been writing much and there's a reason for it. The reason is that I haven't done a darn thing about pursuing this surgery or the lawsuit that everyone I have shared this story with tells me I should pursue. Once I hit the insurance snag, not once, but twice, I let the system derail my goal to get my lazy eye fixed once and for all.

The truth is, it took me so long just to summon the courage to even think about having the strabismus corrective surgery that when things went awry, it was very easy to let other priorities get in the way. But I am failing all of you and myself. So I have made a commitment to make some phone calls this week to get things rolling again.

Please comment, please write, please let me know that you are counting on me to go through with this. It will help, I promise.

Does This Make Me Feel Better About my Strabismus?

Through a trail left by someone who found me on Google, I found this post called "Strabismus and the Rich and Famous". Abraham Lincoln and Barbara Streisand are included. The list isn't exhaustive, I know people have mentioned a couple of other famous actresses with a lazy or crossed eye that I cannot now recall. If you know of any others, feel free to enlighten me in the comments thingie.

The site itself is quite informative and offers everything from random (or technically useless information) like in the above, to detailed information about various solutions for strabismus. They also offer one of the most straightforward definitions of strabismus that I have read. Simply put, strabismus is any ocular misalignment. You can read the more detailed defintion here.

For the record, I think Barabara Streisand is quite striking.

Tired of Strabismus Surgery Vs. Insurance

I'm tired baby. Tired of the insurance run around.

When I saw Michael Moore's movie "Sicko" a couple of months ago, I had no idea I would soon be embroiled in my own insurance battles. Scratch that, I had a feeling. Still, things have been frustrating. My surgery was set, cancelled, set again, and then cancelled again. The first surgery was cancelled due to a bad cold I contracted that left me with a cough. The anesthesiologist wouldn't have it, I had to be symptom free for four weeks.

So, I rescheduled for August. The date was quickly approaching when I got a phone call from the surgeon's office. Poor sweet Pat had to break the news that my insurance had denied coverage because the surgeon I chose was out of network.

Let me clarify, "out of network" does not mean that my insurance doesn't cover this surgeon, just that within the greater insurance network there are apparently multiple networks, and my surgeon and general practitioner were not in the same network.

Ok, so I asked how much it would be if I paid for the surgery myself (some generous friends and family had offered to help me out with this). Pat told me that she would contact the finance department and get back to me with a figure. An hour later, her voice was a little softer, more hesitant.

"Um, you can't pay for the surgery yourself."

Moment of stunned silence.

"So, if my insurance denies coverage, I can't pay for the surgery either?"

"That's right."

"I don't understand."

"I know, neither do we. Apparently your insurance company and the hospital have some kind of contract...(awkward silence)."

"I see. That doesn't make any sense, does it?"

So now I'm pondering the idea of bringing a lawsuit against...well, that's the question isn't it?
Who exactly is responsible for this? The insurance company? The hospital?

Or, I could go to a surgeon in my network. Start the process over.

10 Reasons NOT to Get Corrective Strabismus Surgery

Ok, I confess. I've dropped the ball again. I don't know how people go through these insurance and phone tag battles and still work, raise children, clean the house, or sleep! Still, part of my less than aggressive approach can be attributed to fears and demons.

Here are 10 of them:

1. The surgeon will tell me I'm not a candidate for the surgery and then all these years of working myself up to it will have been for NOTHING.
   
2. I will lose part of my identity. After all, I've looked this way my whole life!
3. I will be one of those unlucky patients that falls into the wee percentage of freak accidents and will be far worse off than I am now.
   
4. My surgeon will be distracted by a spat with their spouse the night before, operate on the wrong eye, and ruin me.
5. Insurance won't pay and I won't be able to justify the expense of a cosmetic fix.
6. I'll look "vanilla" when right now I'm a flavor twist!
7. I'll be blinded.
8. The surgeon will grossly over-correct.
9. The surgeon will grossly under-correct (not nearly as bad as #8...*shudders*).
10. Oh, I dunno. Because I'm SCARED!

The good news is that this list is not nearly as long as my 26 Reasons to Get Corrective Eye Surgery. That's something.

Stay Tuned

More updates are on the way, including the "26 Reasons Not to Get Surgery".

It's going to be juicy.

26 Reasons To Get Corrective Eye Surgery

After today's earlier post, I'm feeling renewed, refreshed, and ready to go another round with insurance companies and receptionists. Ready to be my own mental coxswain. Ready to get on the phone and start pushing buttons again.

I thought, "what better way to psych oneself up than to make a list of reasons"? Isn't that what everyone does? Ok, sure, I could listen to the Rocky theme over and over, or praise myself with positive self-help talk in the shower ("You are a winner"), or do 50 jumping jacks, but I like making lists. It means I get to write, and writing is good.

I want this surgery (no matter how petrified I am) because:

1. They say eyes are the "windows to the soul" and I don't want anyone thinking my soul is warped.
2. Eyes are the first point of contact when meeting someone new...unless of course, you're a woman, he's a guy, and he's staring at your chest instead...and we all know what a stupid no-no that is.
3. My character and intelligence should get a fair chance to speak for themselves. They've got a lot to say!
   
4. I want to lose myself in a beloved's eyes.
5. When I get tired, I don't want to feel the pain caused by the muscles of my "lazy eye" straining.
6. Physicality is important in circles of influence and importance, even if nobody dares say that out loud.
7. I'm tired of "overcoming" it in new situations, having to prove myself a little more than the next Joe. So much energy having to be wasted that I feel is being channeled away from more important and noble things.
8. Yes, I'm going to say it, I want to feel pretty. Not gorgeous, not perfect, just bloody symmetrical.
   
9. The elephant in the room really misses his family and wants to go home.
   
10. I want to hold a gaze and not wonder...
11. I want to put to rest that quiet, subconscious, yet persistent voice of self-doubt that has accompanied this condition for so many years. Stupid sub-conscious voices!
    
12. People should feel at ease around me. More is accomplished when people are at ease with one another.
13. I want to stare the whole world straight in the eye.
    
14. I want to beam love-rays outa my straight eyes.
15. I want to have staring contests with strangers in bookstores...and win.
16. I've still got peripheral vision and I want to maximize it.
17. I deserve it.
18. You deserve it.
19. The medical technology exists.
20. Surgeons need practice.
    
21. Cruel people shouldn't have automatic ammunition.
    
22. It's a terribly awkward moment for all involved when I call on someone and they don't know I'm looking at them. And why should I have to memorize names to compensate?
    
23. I've lived with it long enough.
24. It can close doors of opportunity.
    
25. The tendrils of childhood anguish still have hold of my soft innards.
26. I deserve it.

Now look, I can hear some of you tsk tsking that I'm feeling sorry for myself. BBNNNNHHHH...wrong answer! For a small girl, from a poor town, with a lazy eye, I get a hell of a lot done. I've never sat around feeling sorry for myself while the world passed by, and surgery or not, I'm certainly not going to start that business now. But these are the honest truths, and I want to face them. I want you to face them.

Where I listed things relating to judgements, or closed opportunities, I am referring to my experience and the confirmations of science (follow the links on the right). Where I list things referring to human relations, I am referring to the poetry of symmetry, and the harmony of beauty.

Surgery or not, successful surgery or not, I will always be me. And I'll still kick your arse in a staring contest any day of the week!

Update II

There is no update. Sad. But true.

I was afraid this would happen. There aren't enough bloody hours in the day to make all the necessary phone calls. When I hit that last dead end, I dropped the ball. Albeit temporarily, but still dropped it. It nags at me daily but my work situation doesn't allow for too many personal calls during the day.

Actually...as I sit here, I realize there is a profound update. Not on insurance companies, or who my surgeon will be. On a personal level.

Some of you have remarked, either here or through personal email, upon my bravery at sharing this story so "publicly".

Yeah, damn it, I am brave! I'm finally talking about the elephant in the room. Blogging about this is seeping into my "walking in the real world" life, and I'm talking about it more openly there too. And I'm pushing others around me to talk about it more honestly with me.

Trouble is, with something of this nature, mentionings are in two categories. "Those who mention" and "Those who don't". The first group (this is from a lifetime of experience folks) tends to mention callously, without forethought, or they are downright rude or cruel. The second group, being of the more polite and kind variety of human beings, don't mention it unless I do, or they do so politely and with curiosity, and generally after knowing me for some time.

This...this alone is enough reason to help you understand why I want this fixed. I don't wish to be defined by this one piece of my physicality, nor do I want that feeling of knowing that it is an uncomfortable subject for others around me. That second part? That's why I'm blogging about it.

Meanwhile, I've been quoted here.

Update

Hi everyone. As always, thanks for coming along for the ride. Unfortunately, I don't have any news to report. Still playing phone tag with the doctor's office. The nature of my work and work environment make it difficult to make calls during the day, and of course, the doctor's office closes at 5:00. So...{sigh}.

Still working in that direction.

Had an interesting exchange with a visitor that was adamant I should try vision therapy instead of surgery. I'd really love if people would share their experiences with both. Not just for my benefit, but also for everyone who is reading and considering surgery. Vision therapy doesn't seem like a viable option for me, not having enough vision to work with. Yet I would be interested to know if it has worked for other readers, or what they know about it. I'll do some digging myself in the meantime.

Still

Currently still playing phone tag with doctors. I will write more this weekend, and hopefully will have something of interest to report.

Absolutely Argh!

And the predicted insurance problem begins to rear its ugly head.

My appointment, yeah the one in June, was cancelled, because of a back and forth misunderstanding between my GP's office and the surgeon's office. Boston Children's Hospital needs a referral to book the appointment, but my GP office says they've never had to do a referral for my insurance.

So I called BCH, spoke to the referral department. Yes, they need a referral number to book the appointment.

"Can't I just make the appointment and pay for it if insurance won't cover it?", I asked.

"No, that would be illegal for us to bill you without the referral."

Ok. I called my GP's office and they continued to act confused and fussed over the matter. They didn't even know how to make the referral. I gave them the 800 number for pre-authorization from my insurance card and was told they would work on it in the morning.

Update forthcoming.

Deflated

I walked into my GP's office at 1:45 today, already on the defense. This would be my first time meeting the doctor, and with my lousy insurance, I was pretty sure I was going to have to fight for my referral to Boston Children's Hospital. I tried to follow a friend's advice to just relax, have faith, and trust. Sure, no problem...just as soon as I had that referral in my fist.

The doctor, a fellow Smith grad, whipped through the physical exam, asked about the referral I was requesting, and not a single eyelash batted in my direction as she wrote furiously on her notes.

"No problem, just give us a call when you have the appointment and we'll put the referral through".

Huh. Not a bad start. I was thrilled! I drove straight home to make my appointment. Of course I didn't expect smooth sailing all the way, but I was pretty high when I called BCH to schedule my appointment with one of their surgeons.

"We can get you in on June 18", the receptionist chirped over the phone.

June? JUNE? How could this woman dare to be so stinking cheery about the news that I would have to sit tight for three months? For just the bloody consultation? Gah. I felt deflated. Three months! Three months before I even get to sit with a surgeon and discuss my options, find out if I'm a candidate, discover if insurance will pay or partially pay, or even make an appointment for surgery.

Now what? I mean, I've waited my entire adult life, so really, what's three months? Three months is a hell of a long time, that's what. When you have been waiting your entire adult life and you decide to finally go for something, three months might as well be three years. I want to be scheduling surgery already. I want to be in recovery yesterday. I want this to be over with, and the last thing I want is to have more time to think.

What Day Is It?

There isn't much to report, but I wanted to let everyone know that progress is still under way. I recently had a regular eye check up and the good news is that I still retain some peripheral vision and my pupil still responds to light.

I also have an appointment with my GP on Monday to try to get the referral to Boston Children's Hospital. This, and the fight to get insurance to pay, will be the two biggest obstacles so squeeze your eyes shut and think really good thoughts!

I'll post an update after my appointment on Monday!

More Eye Surgery in the Blogosphere

In my daily quest for information, and other souls going through eye surgery or cotemplating it, I found two other bloggers. Though not the same type of surgery, I thought they still might be of general interest to visitors to meet these two other blogs.

My Visian Experience
and
Ami Chopine (her blog is not devoted to just eye surgery, but she is a clever enough writer to be worth visiting for visiting's sake.)

It's Monday

Hi all, and thanks for visiting. I've had a lot of visitors from all over the world! I would like to encourage people who are visiting to comment, ask a question, make a suggestion for content, etc. Part of the goal here is to open more dialogue. Although not a forum, I will reply to comments, and if you have a suggestion for content I will do my best to follow through.

Update - I have a call in to one surgeon and my GP. I will be trying to get a referral to Boston Children's Hospital. They have a superb staff, and a team of specialists for adult strabismus treatment. My insurance isn't the best, so I might have to push for this. Wish me luck!

Day Four ~ Contacting Surgeon and New Study

I cancelled my afternoon appointments today due to a snow storm, and thought it would be a good time to call the eye surgeon I was referred to. Trouble is, apparently the office closed early due to the snow storm too! Now I will have to wait until Monday.

In other news, found this new study. According to my calculations, this means only about a 64% success rate! That's just over half! This doesn't bode well.