NOAH AOC

Has anyone had surgery with Dr. Hertle?  We have an appointment set up with him on Nov 3 with surgery on Nov 4 for my 2 1/2 year old son. My husband and I are nervous, and would like any insight to the surgery, and Dr. Hertle, what you thought of the entire process.

It would be greatly appreicated. Thank you.

Kelly Rodden

My son also had surgery with Dr Hertle when he was 2 1/2 (he is now 4 1/2, so two years ago). They surgery went well and my son was up running around one hour after surgery like nothing ever happened. We were also thrilled with the results/benefits of the surgery...better acuity and depth perception. I was so glad we decided to have it done

Any other questions please ask and good luck. Please update us after the surgery  

Kelly,

I just made an appointment for my son Zachary to have an eval by Dr. Hertle on Nov. 3 and surgery on Nov. 4 if recommended!  Our appt. Nov. 3 is at 10 a.m. and then we will have eye movement recordings done with Dr. Yang at 12:30.  I am also very nervous, but know that Zachary will be in good hands.  We need to keep in touch so we can plan to meet while there!  Where will you be coming from?  We will be traveling from SC, about an 8 hour drive.

Holy cow!  I just realized from an earlier post that you are in Columbia!  We are in Fort Mill.  I actually work for a law firm in Charlotte and our home office is in Columbia (McAngus, Goudelock & Courie).  How neat!

Brittany,

I am glad that you finally got to get your appointment.  Cheryl called me today to make sure that I had mine taken care of, so I was hoping that she had called you back as well.  Whether or not Zach has the surgery, I am sure that you will just adore Dr. Hertle.  He gives you such great answers and takes his time with you. 

Vickie

Thanks Vickie!  She did call me back this morning.  Their system kept trying to fax something to my cell phone, so I think she got that fixed too. I am a very nervous Mommy today thinking aobut the possibility of surgery, but am excited about meeting Dr. Hertle and getting his assessment of Zachary.  I just hope Zach's current PO isn't one of the ones that doesn't understand the procedure.  That's why I'm trying to learn as much as I can about what Hertle does that is so different from the traditional nystagmus surgery so that I can have an intelligent conversation with her on the subject when we see her on Sept, 10th...

Hi my name is Diane and I have a 18 month old boy with OCA1. I saw your message and I had some questions I didn't know if you or anyone could answer. I was just wondering what the surgery is and if it was something specifically for your child recommended by a doctor or if it is something I should look into to help improve my child's vision. I am in Canada and I asked my son's opthamologist if he needed any sort of surgery but he says no. I asked him if he needed surgery for his nystagmus but he said he didn't but I didn't get him to explain what it was or how it would improve his sight. I am not sure if someone could answer my questions, if you could that would be great. Thanks

Diane, 

Dr. Hertle's surgery is called a tenotomy.  Most doctors have never heard of it, so it usually something that we seek to help our children.  The surgery can be combined with Strabismus surgery and also help move and broaden the null point.  It is an eye muscle surgery.  According to what he said at the conference, it COULD give you better vision by dampening the nystagmus and creating a straight on null point.  The first PO that I went to said that the surgery did not work too.  But I decided to go to see Dr. Hertle anyway.  I was very happy with my appointment, but I urge you to talk with people that have actually had the surgery for their children as my son has not had it yet.  He is only 3 mos old.  Look under Roxanne's old posts, as I know her daughter (Lexie) had the surgery.  She is such a nice person.

Vickie

Hi Kelly,  My daughter Alexis did have the surgery in April she was a couple months shy of 3.   I would be happy to give you any insights.  I know afterwards my daughter loved cold washclothes so bring a bunch of clean ones.  I also brought plenty of tylenol and her favorite foods and drinks.  We played her DVD's for her.  She would not open her eyes until we got home and wore sunglasses for 4 or 5 days.    If your son tolerates the tylenol with codeine he should do well afterwards.

Make sure you get a prescription for tylenol with codiene, oral antibiotics, and a tube of steriod/antibiotic gel that you apply on his eyes.  Plus what you should do in case of an emergency or a number you can call.   My daughter is doing wonderfully now and we have seen many improvements.  I have gone into detail on my posts if you search but would be happy to answer any questions you have.

 Thank you Miss Vickie for the compliment

Diane -

   It did improve my daughters vision, headaches, and torticolis (neck problems)  She had a pretty difficult null point.  There are flights for free called angel flights if you are entertaining having your son looked at in the future.  I do not know if this would be an option but thought I would put it out there just in case.  The surgery does help the null point and dampens the nystagmus.  How much is different for each person.

Thanks for the helpful hints, Roxanne.  That will come in handy in November when we go up there!

Diane, you can also look back through the post called "Post-op update on Jordan" and get some info that I got last week on the surgery.  Hope this helps!

Hi - - I have just heard of Dr. Hertle. Does anyone in New York do the nystagmus surgery? Also, is there an age limit for the surgery (my son is 18), and how much is the nystagmus reduced, as my son's is fairly pronounced. My son had unsuccessful strabismus surgery when he was 2 (it worked for awhile and then his eyes moved outward, but he refuses to have more surgery because he thinks it will hurt). My son has OCA1A and his best corrected vision in both eyes is 20/200. He leads an extremely productive life at present, so unless the surgery would be of real help to him, I don't want to put him through it or recommend he get it. Thanks for any help you could provide. 

Spencer's mom:

There has been a lot of discussion on this board lately and also at the American Nystagmus Network's yahoo group about surgery.  Hopefully you have had a chance to read through some recent posts on this board about it.  When I was researching it recently, I came across this website for a practice affiliated with NYU that does nystagmus surgery:

http://www.pedseye.com/nystagmus_surgery.htm

There have also been posts on here about a doc in NY, Dr. Camp(something), so you could do a search for those.

Hope this helps!

Oh, and I forgot to mention that the nystagmus may or may not be reduced.  The goal(s) of the surgery is to move a null point to center if there is one to move and to decrease the amount of time it takes the eyes to focus on something and increase the amount of time the image stays on the fovea, the part of the retina that helps us see detail.  There are much more detailed descriptions of this if you go to Dr. Dell'Osso's website at www.omlab.org.  He has worked with Dr. Hertle and has nystagmus himself.

Brittany,

You have really done a lot of research on this.  Thanks for sharing your information.  I actually came across Dr. Dell'Osso's website as well a while back.  I called his office and they referred me to Dr. Hertle because he is so much closer to me and Dr. Dell'Osso is a researcher and has a PhD which means that he can do the wavelenght thesting but not the Nystagmus surgery.  So they thought I would be better suited with Dr. Hertle.

Vickie

No problem, Vickie.  I just learned the hard way a few years ago when I went into Lasik surgery thinking I'd have perfect 20/20 vision the next day without doing my research.  So, when I still have to wear glasses now and have terrible night vision, I wish I had done more research!  I just refuse to put Zach through a surgery without knowing the risks, benefits, etc., especially after my experience with Lasik!