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.