This will be a very long post. I hope I don't put you to sleep. Immediate family, I have sent this out via email sorry for the repeat info. I am typing in purple for them. All the Purple type is new info for them. Anything highlighted in orange is medical mumbo jumbo that you only need to read if interested. We had our Pre-OP appointment this morning and are moving forward with Surgery on Friday. Scroll down for today's Pre-OP appointment info if you have received the two emails.
Anyone keeping up with our blog knows about Bella's Intermittent Exotropia; Strabismus (lazy eye).
Here is how we got to Friday's Surgery:
Date of this email: Feb 13, 2013
Bella's Surgery is scheduled for March 1st.
She is having "BiLateral, Lateral, Rectus Recession."
She has a Pre-OP appt on Feb 27th and a Post-OP appt on March 6th.
Her Dr. is Dr Joan T. Roberts from NC Eye, Ear, Nose & Throat
I have asked a ton of questions, to both her Eye Dr, Dr Roberts and to her pediatrician Dr. Gelber.
Here are a few of my questions.
1.) Will she grow out of this? No, on the contrary this will get worse as she gets older if not treated.
The earlier the age that this is fixed the better her outcome (sight) will be.
2.) What is the treatment? Patching or Surgery (we've done patching for the last year)
3.) If patching doesn't work is surgery the only option? Yes
4.) Is this because she was born early (Bella was born at 34 weeks and 4 days) ?
No, this is usually hereditary and is in the family line. Her siblings and her future children
should be watched for this. (this is in the family line somewhere.)
*Side note: Jaxson was tested and his eyes are fine. Kylie is fine and Destine' also fine!
*Recently it has come to my attention that my brother also has diagnosed Intermittent Exotropia (Strabismus) and so did my Paternal Grandfather Dale and Paternal Aunt Dawn. (none of this actually changes Bella's diagnosis but it does give us a little more information)
5.) You are sure that this isn't because she was a preemie? Yes, this is common among all
gestational ages. There is no evidence that this is more common in preemies.
6.) I went over the risks again and asked all the same questions that I posted in the blog already.
Basically she told me that it's less risky than cataracts surgery but more risky than Lasik surgery.
We are very skeptical of Dr's and with good reason. With our track record we are very picky right from the get go. If I don't like a Dr. OR if I don't like the front desk staff OR the nursing staff, I am out of there and I find a new Dr. I went to two Dr's before finding her pediatrician and I went to one other Dr before deciding Dr Roberts was going to be Bella's specialist. I got Dr Roberts referral from Dr Gelber. I trust Dr Gelber with my child's life every time they are sick. I trust my instincts and he does as well.
It never occurred to me that I should have gotten a second opinion for Bella's surgery. Thanks Mom for putting that fear in my head. I say that with sarcasm and with a sincere THANK YOU! I had gotten very comfortable with Bella's Dr.s that "duh" a second opinion is necessary and I hadn't thought of it. Now the problem is do I have enough time to get a second opinion before her surgery in 15 days.
Bella and Jaxson had a recheck today for their ear infections. Normally I would have checked their ears at home myself and decided that I didn't need the recheck and cancelled. BUT I wanted Dr. Gelber's opinion about Bella too.
He reassured me that Dr. Roberts is a great Dr. and has an impeccable record. This is her specialty and she
is the best in this field. However a second opinion could never hurt. He gave me another Dr's name (Duke Eye Center) and said they are great. Tell them you need a second opinion and they should be able to get you in before her surgery but if they can't give me a call and I will call them personally.
is the best in this field. However a second opinion could never hurt. He gave me another Dr's name (Duke Eye Center) and said they are great. Tell them you need a second opinion and they should be able to get you in before her surgery but if they can't give me a call and I will call them personally.
After that, we had a long discussion about Bella's treatment thus far and all the results from her Dr visits
with Dr. Roberts (he pulled her records right then and there, thank you technology), He did reassure me that he also feels that since this is time sensitive she needs the surgery now. He told me that patching is the only other treatment and if she isn't keeping the patches on surgery should be sooner rather than later. Children under 5 are more likely to respond better to this surgery in the terms of outcome (sight recovery). He also did warn that she will probably need more than one surgery. Something that I was told but not as a 80% that she will need more than one surgery. They did say she may need more than one surgery but I took it as a possibility not a probability. So after our discussion he said that while he didn't think a second opinion is necessary, he said sometimes we need to make "Grandma aka Nana" happy to make "Mom" happy.
So in all sincerity (no sarcasm) THANK YOU "Grandma" (aka Nana). We are getting our second opinion on Feb 20th at Duke Eye Center in Durham. They were awesome to get us in with such short notice.
I will feel better knowing we have a second opinion. If you hadn't mentioned it, I wouldn't have thought of it
and I would be stressing more than I was. I feel so much better with Dr. Gelbers opinion and I wouldn't have sought that out, if you didn't mention it. I will keep you all updated with the second opinion.
I am thankful to have an awesome Mom who isn't afraid to give me her advise and opinion.
Below (highlighted so you can skip it if you want-red is my two sense) is a simpler definition for what Bella has. Dr. Gelber gave it to me for "Grandma" (aka Nana). It is simply called lazy eye. But there are different forms of lazy eye. Refer to the blog for the more detailed explanation of her Starbismus.
blog link from Jan 2012
THIS IS A HANDOUT THAT BELLAS PEDIATRICIAN GAVE ME
Amblyopia
Lazy eye
Last reviewed: September 18, 2012.
Amblyopia, or "lazy eye," is the loss of one eye's ability to see details. It is the most common cause of vision problems in children.
Causes, incidence, and risk factors
Amblyopia occurs when the nerve pathway from one eye to the brain does not develop during childhood. This occurs because the abnormal eye sends a blurred image or the wrong image to the brain.
This confuses the brain, and the brain may learn to ignore the image from the weaker eye.
Strabismus is the most common cause of amblyopia. There is often a family history of this condition.
The term "lazy eye" refers to amblyopia, which often occurs along with strabismus. However, amblyopia can occur without strabismus and people can have strabismus without amblyopia.
Other causes include:
Childhood cataracts
Farsightedness, nearsightedness, or astigmatism, especially if it is greater in one eye
Symptoms
Eyes that turn in or out (this is a symptom that Bella has)
Eyes that do not appear to work together (this is a symptom that Bella has)
Inability to judge depth correctly
Poor vision in one eye (Bella has a little nearsightedness)
Signs and tests
Amblyopia is usually easily diagnosed with a complete examination of the eyes. Special tests are usually not needed.
Treatment
First, any eye condition that is causing poor vision in the amblyopic eye (such as cataracts) needs to be corrected.
Children with a refractive error (nearsightedness, farsightedness, or astigmatism) will need glasses.
Next, a patch is placed on the normal eye (Bella's Left eye) . This forces the brain to recognize the image from the eye with amblyopia. Sometimes, drops are used to blur the vision of the normal eye instead of putting a patch on it.
For treatment of crossed eyes, see: Strabismus
Children whose vision will not fully recover, and those with only good eye due to any disorder should wear glasses with protective polycarbonate lenses. Polycarbonate glasses are shatter- and scratch-resistant.
Expectations (prognosis)
(**** Bella's Dr explained that this is a time sensitive issue. The faster we act the better her outcome (sight) will be!)
Children who get treated before age 5 will usually recover almost completely normal vision, although they may continue to have problems with depth perception.
Delaying treatment can result in permanent vision problems. After age 10, only a partial recovery of vision can be expected.
Complications
Eye muscle problems that may require several surgeries, which can have complications
Permanent vision loss in the affected eye
Prevention
Early recognition and treatment of the problem in children can help to prevent permanent visual loss. All children should have a complete eye examination at least once between ages 3 and 5.
Special techniques are needed to measure visual acuity in a child who is too young to speak. Most eye care professionals can perform these techniques.
References
Olitsky SE, Hug D, Plummer LS, Stass-Isern M. Disorders of eye movement and alignment. In: Kliegman RM, Behrman RE, Jenson HB, Stanton BF,eds. Nelson Textbook of Pediatrics. 19th ed. Philadelphia, Pa: Saunders Elsevier; 2011:chap 615.
Olitsky SE, Coats DK. Amblyopia and its management. In: Tasman W, Jaeger EA, eds. Duane's Ophthalmology. 15th ed. Philadelphia, Pa: Lippincott Williams & Wilkins. 2009:chap 10.
Review Date: 9/18/2012.
Reviewed by: Neil K. Kaneshiro, MD, MHA, Clinical Assistant Professor of Pediatrics, University of Washington School of Medicine. Franklin W. Lusby, MD, Ophthalmologist, Lusby Vision Institute, La Jolla, California. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.
SECOND OPINION: (Feb 20, 2013 email)
Today's second opinion was interesting. Before I begin, I must say I am still comfortable with doing her surgery on March 1st. I did find out a few new things. First that we are not trying to save her sight per-say, we are trying to save her depth perception (which in a way is her sight but a little different than what I was originally thinking). I also learned that her sight is great. I know you are saying "wait, what?" I said the same thing. I didn't think they could test that because she can't answer any questions. Example: "What letter is that?" I guess I was naive in thinking that they never actually tested her sight and that the measurements were only to see where she was looking. Not that they were actually testing her sight. Yes, now I feel kind of stupid for not asking the most basic question. Anyway back to it. New info: Her sight is great. This we already knew: She can see great up close. It is when she looks far away that she drifts off. She controls it VERY well.
Our second opinion Dr Sasapin Prakalapakorn (um I can't say that so were just going to call her what the ladies in the office called her "Grace") Grace said "while she sees nothing wrong in moving forward to surgery at this point but In Bella's case because of her control, she might suggest to wait 6 more months." She said that "sometimes she waits until the vision goes to 30/40 before she moves to surgery. Waiting 6 more months with Bella's control, Mom, you could essentially look at Bella and if her eye drifts say "Bella pull your eye in". If she, at this point could understand she may just pull it in." She has some patients at 14 with this and they didn't have surgery and they just pull it in and control it. That is, if it stays the same over the next 6 months (with continued patching 3 hours a day left eye).
She said the biggest risk with surgery is over correction and needing more surgeries to fix over correction. Over correction will need to be fixed as soon as possible because over correction can do the opposite and cause her depth perception to deteriorate. Under correction is not as big a deal. The idea is to get as close as possible and have her adjust naturally to compensate. Slightly under correction is OK, she will most likely be able to fix that naturally. I have know Idea why that is, that's what she told me.
Now, why am I still leading towards the surgery. Because after she explained all of this Grace said "with that said, surgery is really a decision that you and her current Dr should make. Dr Roberts has worked with her over the last year and has watched her progress. If I had seen her 6 months ago and saw it getting worse I may be moving toward surgery at this point as well. I personally still tend to wait more towards 4 or 5 years old for vision to get worse and watch how her depth perception grows and her control. However, only if it is stable and not getting worse."
After this appointment with Dr Grace, I do have a few more questions for our pre op appointment but I feel it will go in favor of the surgery.
Taking in to consideration Bella's history, I feel moving forward with surgery at this point is the correct way to proceed. I am also thinking that it might be better even if she needs another surgery or two (not that I want that) to fix it before her vision gets worse. I am thinking that I do not want to wait to do surgery and then glasses at the same time. I feel that may be too much change for a little person. Lets get the surgery now and see how she adjusts. I am thinking that with her sight as great as it is right now maybe it will save her vision if we do it now? Logically with all the info I have found online and with all three Dr's (her pediatrician, both eye specialist) opinions, I feel that this is the right choice. but by no means an easy one.
This is probably the suckiest part of being a parent. If I were making this decision for myself it would be NOT be this hard. As parents we constantly wonder are we doing the right thing? You do the research and with so much information out there, I am not sure you actually get a yes or no answer? You try your best, do what you think is right and pray to God you don't screw up? It is times like these that you really appreciate your parents and what your parents went through to get you where you are today. I will keep you updated with her pre-op appointment next week.
Bella's Eye Medical History Time line:
Sept 2011 - I noticed Bella's Eye drifting.
After Internet searching and calling 3 pediatric Ophthalmology offices...
Oct 2011 - First Appt with Dr Roberts (Diagnosed with Strabismus=Intermittent Extropia of the Right Eye)
Jan 9 2012 - Enrolled in Intermittent Exotropia Study 2 with the Jaeb Center for Health Research=randomly selected for patching-Alternate patching Left, Left, Right for 3 hours a day
April 9 2012 - Looks like it is helping to me but measurements are the same (continue L, L, R alternating 3 hours a day)
July 11 2012 - Getting Worse (Switch to patching left eye only 3 hours a day)
Oct 24 2012 Same No improvement (continue patching left eye only 3 hours a day)
Feb 6 2013 Worse Moving forward with Surgery March 1, 2013
Feb 20 2013 Second opinion with Dr Prakalapakorn (Grace)
Feb 27 2013 Pre-OP with Dr Roberts
March 1 2013 Surgery
March 6 2013 Post- OP with Dr Roberts
Today's Pre-OP appointment
Today Feb 27th, 2013 was Bella's Pre-OP appointment. Daddy, Bella and I saw Dr Roberts and went over our second opinion information.
We asked a few new questions:
Why both eyes? Because if they did in only in one eye, they would have to adjust two muscles in one eye by doing one muscle in each eye you decrease the stress on the patient and their eyes. It is easier to recover from one muscle in each eye than from two muscles in one eye.
Going over the "wait theory" from our second opinion: she said yes you can wait if you want and that would be OK. She prefers (and this differ's from the second opinion) to do the surgery before the eye sight gets worse. If it was stable, yes wait! If it was getting better, yes wait. Does she think Bella's will get better? No. Will the risks change over the next 3 or 6 months? No. Her opinion is that yes we can wait if we want (and I felt no pressure at all) but long term recovery in her experience has been better when it is done before their sight gets worse.
Do I think waiting 3 or 6 months will make this decission any easier? No. In my opinion will Bella's eyes get better in the next 3 to 6 months? No. Maybe if her last three visits were stable or improvements but they weren't. We are moving on with surgery on Friday!
We will get a call on Thursday and find out what time. They go in age order, so Bella will probably be early.
We'll keep ya'll posted.
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