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Nystagmus?? Please Help!!

Last post 07-18-2008 6:57 PM by Nikki. 21 replies.
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  • 07-17-2008 4:57 PM In reply to

    Re: Nystagmus?? Please Help!!

    Sheri:

    Just wanted to say hi since I saw your post.  I am so happy that Zack's vision is 20/70 - absolutely incredible.  My Zach's at a distance is roughly 20/200.  He is able to read the 20/30 line up close.  I am very hopeful for his vision and am still considering a visit to Dr. Hertle.  Take care!

    Brittany
    Mom to Zachary, Age 4 w/ albinism (probably OCA1B)
    • Post Points: 20
  • 07-17-2008 6:30 PM In reply to

    • Nikki
    • Top 500 Contributor
    • Joined on 04-04-2005
    • Kansas City, MO
    • Posts 21
    • Points 315

    Re: Nystagmus?? Please Help!!

    To be honest I don't know that much about Dr. Hertel's surgery. Michael had this surgery about 12 years ago and from what I understand isn't Hertel's wsurgery newer. I ask this because it has been quite the topic at AI latley and had been meaning to ask them about it. Michaels surgery was same day and they moved the muscles around in his eye much like they do for cross eyes. Give me a day or two ( as it has been so long since the surgery ) and I will see what more info I can give. He had the surgery at Children's Mercy Hospital in KCMO.

    Nikki

    Nikki
    Mother of Two Wonderful Boys
    Michael 13
    Christian 10

    • Post Points: 20
  • 07-17-2008 8:37 PM In reply to

    • Sheri
    • Top 10 Contributor
    • Joined on 04-17-2002
    • Evans Mills, NY
    • Posts 578
    • Points 6,110

    Re: Nystagmus?? Please Help!!

    I don't think that I can remember Zack not having a null point.  I have pictures of him as early as a year with his head down and his eyes up which was his null point.  When he was small I didn't see a need to correct this as it seemed like no big deal but as he got older his back began to hurt and he started getting headaches daily.  It was then that we corrected the problem.  Sheri

    • Post Points: 5
  • 07-17-2008 8:46 PM In reply to

    • Sheri
    • Top 10 Contributor
    • Joined on 04-17-2002
    • Evans Mills, NY
    • Posts 578
    • Points 6,110

    Re: Nystagmus?? Please Help!!

    Thanks Brittney.  I know that some consider the surgery to be controversial but it was the best thing that I have done for my children.  Zack just went for his contact exam and then to see Dr. Hertle two weeks ago and all is good.  Dr. Nau told us that Zack's vision has been stable since the surgery and she has decided that it is only necessary to see Zack once a year from now on.  YEA!!!  I look forward to seeing you in DC in two years time or maybe at NOAH summer camp next summer.  You will not recognize Brooke.  She is doing amazingly well.  We are treating her immune system and as her viral loads go down the autism symptoms become less and less.  Two years ago before we started treatment she was considered severe and in May she was tested again on the autism rating scale and she is now considered mild or moderate.  Give me a few more years and she will be in a regular classroom speaking.  I know that not all the things that I do are considered medically proven but the fact remains that no one can say that my children have not benefited from what we have done.  Brooke's pediatrician is thrilled with her progress but admits she doesn't understand the connection.  Sheri

    • Post Points: 20
  • 07-17-2008 8:52 PM In reply to

    • Sheri
    • Top 10 Contributor
    • Joined on 04-17-2002
    • Evans Mills, NY
    • Posts 578
    • Points 6,110

    Re: Nystagmus?? Please Help!!

    The difference in the nystagmus procedure that was done 12 years ago and the one that Dr. Hertle does is only that 4 muscles are removed and reattached instead of two.  Sheri

    • Post Points: 20
  • 07-18-2008 1:53 PM In reply to

    Re: Nystagmus?? Please Help!!

     

    Sheri:

    Having seen what Zack's nystagmus was like in 2004 and then after Hertle's surgery in 2006, I KNOW what an amazing difference it can make.  There is such an obvious difference in the movement, and if that translates to much better vision, then that's terrific!  My hesitation is because of personal experience with elective eye surgery.  You know about my bad Lasik outcome, and it just makes me hesitate more to put Zach through an eye surgery.  He hasn't had any eye surgery yet.  He does have strabismus that is mostly corrected with glasses, but for some reason has gotten worse lately.  I don't know if he will need strabismus surgery or not.  If his doc does recommend it, I will definitely take him to Hertle for an opinion to see if he could have the strabismus surgery, null point repositioning and tenetomy all at once if he is a candidate.  I've always said you are a wonderful mom and Brooke's challenges have been incredible.  To hear that she is doing so well is just terrific.  I do hope to see you guys again in D.C.!  I hadn't even thought about the summer camp for Zach.  I guess he could go next summer, huh?  I will look into it...

    Brittany
    Mom to Zachary, Age 4 w/ albinism (probably OCA1B)
    • Post Points: 5
  • 07-18-2008 6:57 PM In reply to

    • Nikki
    • Top 500 Contributor
    • Joined on 04-04-2005
    • Kansas City, MO
    • Posts 21
    • Points 315

    Re: Nystagmus?? Please Help!!

    You know I could have sworn they told me they were moving four muscles when they did his surgery. In fact I know they did. In fact they said that moving four in stead of two is what made it different for him and his situation.

    Nikki

    Nikki
    Mother of Two Wonderful Boys
    Michael 13
    Christian 10

    • Post Points: 5
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