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Tuesday, February 21, 2012

To Ohio!...?

Today, we had a visit from Makayla's Vision Therapist.  She and Makayla's Physical Therapist have been coming almost every week now since the twins were just four month old.  I really appreciate our visits with them.  They have given us so many tools and resources to help Makayla develop.  I don't think they know, but they have moved me to tears on more than one occasion by the progress they have helped Makayla make, and by giving me the confidence I need to be the best mom I can be to Makayla.  

Several months ago when we were waiting for Makayla's MRI results, I was doing lots of research on Nystagmus and connecting with a few other moms of children with Nystagmus to share information.  During my research, I found out about Dr. Hertle at the Children's Hospital in Akron Ohio, and several treatments and surgeries he is using to help children and adults with Nystagmus.  After getting in touch with some people through the American Nystagmus Network, I was able to talk to lots of people who have had his eye muscle surgery which is supposed to slow the eye movement.  Many of the patients notice little or no eye movement at all after surgery, except during times of stress or fatigue.  I have yet to read anything negative about his treatments. 

Here is a video about that surgery.  It's very difficult to watch, but I found listening to the sound without watching to be very informative. This video is from 2007, and based on what I've read and seen, the surgery and treatments have actually come a long way since this video was made.  Horizontal Tenotomy: A Treatment for Congenital Nystagmus

When I first brought up the surgery with Makayla's Vision and Physical Therapists, both of which work with many children, under three, with Nystagmus, they had not heard about Dr. Hertle or the surgeries.  But from talking to the Vision Therapist today, she seemed to be a lot more informed.  She said that she's been reading up on on the treatments lately, and I get the feeling that one of her other students may be getting ready to have the surgery.

Traveling to Ohio for what probably will be several appointments, would be a huge deal.  Would I travel alone with Makayla?  Would my husband be OK at home along with Austin knowing that his little girl is having a life changing surgery? Would I be able to handle that on my own?  Would all four of us travel to Ohio?  Could we afford that?  My questions never end.

I sent a request to Dr. Hertle's office today to see about getting more information and I reached out to some people through the American Nystagmus Network to get input.

This isn't about the surgery though.  I actually hope that she doesn't need the surgery.  This is about getting Makayla seen by a doctor who knows as much about her condition as possible.  I do like the Pediatric Opthemologist that she is currently seeing, but it is just obvious that her knowledge of Nystagmus is minimal, and that seems to be the case of most POs.

5 comments:

  1. One of my very dear girlfriends has a son who has Nystagmus and has had the surgery two times. He just turned 5. His glasses finally seem to help him, but he still has some double vision problems. Prayers for you and your little girl. Following from the hop. -Kim http://bbunchmama.blogspot.com

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    1. Thanks Kim! Do you know if he had the eye muscle surgery or one of the null point surgeries?

      Thanks for checking us out! I'm following you now too! :)

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  2. I am sorry that I don't anything about the condition, specifically, but I just wanted to say I am confident that whatever is needed will find a way to be.

    When I started reaching out to others about Drew's scoliosis, it was amazing how doors just seemed to open. I don't know if there is a Shriner's Hospital affiliated with the doctor or in the network of doctors, but they were extremely willing to help us.

    Praying for you and your sweet family!

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  3. I've been doing internet research for my granddaughter who has been diagnosed with Nystagmus shortly after birth. She is 10 months old now. Did your daughter have the surgery with Dr. Hertle? If so, has the outcome been worth it?

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