NOAH AOC

 Hi All-

We met with our PO, Dr. Lustig, yesterday and he is recommending surgery ASAP to correct Mira's strabismus (in both eyes) and her chin down head tilt.  I asked if he would also do the tenotomy surgery and he said that this essentially was tenotomy because they will be disconnecting and reconnecting four muscles.  He said he had actually spoken with Dr. Hertle on this very issue a few months back and felt confident that he would agree.  He also said that the eye movement recordings were mostly just for research purposes at this point, and not a necessary part of the surgery.  We had always planned on taking Mira to see Dr. Hertle before going ahead with the surgery, but now that he's vanished I'm at a loss as to whether we should wait for him to reappear or if we should just go ahead with our PO.  Her strabismus is getting bad, and the PO feels that we shouldn't wait to correct it (which makes sense to me).

 So I'm curious if anyone else has heard this before, that as long as you are detaching 4 muscles you are essentially doing tenotomy, and if you have a child who has had both of these corrected, did you also notice a dampening of the nystagmus?  And also, just a last plea for info on Dr. Hertle - if anyone has heard anything, and for people who have had surgery with him, if you feel it is worth the wait given the situation I just described.

 Thanks so much,

Hana

Hana,

I'm sorry you haven't received a reply yet.  I have not been on the boards for a while since I just had another baby 4 months ago and he keeps me rather busy.  :)  Dr. Hertle's patients do not yet know where he is going.  I have heard that we may know at the end of February, but we don't know any more than that. 

As far as your question regarding tenotomy, the short answer is that tenotomy is the term for detaching and reattaching the muscles in the eye.  This is done as a part of whichever eye muscle surgery is deemed best suited for Mira.  I highly recommend you look at Dr. Dell'Osso's web site: www.omlab.org.  He is a researcher with nystagmus that has worked closely with Dr. Hertle.  He explains the various eye muscle surgeries that are performed on people with nystagmus.

You can also search my posts as I know I have written a long one about the various surgeries.  I just don't have time to search for it right now.

By the way, my son Zach had surgery with Dr. Hertle on 11/4/08, and according to the eye movement recordings and my own visual observation, his nystagmus has damped.  There may or may not be damping noticeable to you and me as a result of surgery.  The goal of nystagmus surgery is to broaden the null zone and increase foveation time, the amount of time the visual image stays on the retina for the best image possible.

Good luck. 

 

Thanks for your reply, Brittany, and congrats on your new baby.  We went ahead with the surgery last week with Dr. Lustig, since it seemed like it could be a long wait before Dr. Hertle returned, and Mira's strabismus was getting very bad.She ended up having 3 muscle surgery.  Her strabismus and head tilt are gone, and she seems to be seeing things much faster - it used to take a while for her to focus on an object, and now she sees immediately - I think that corresponds to the increased foveation time?

  In any event, for those considering surgery, here are pictures of Mira before the surgery:

And 3 days post-surgery:

I am so glad to hear Mira is doing well since surgery! The pics are great. Would love to hear her progress. I know how scary it is when their strabismus gets worse. She looks wonderful for 3 days post op!

 Thanks, Roxanne.  Mira had a very speedy recovery.  The day of the surgery she mostly slept.  The next day was the toughest - she was obviously uncomfortable and tired quickly, so she would be up for about an hour, then nap for half an hour, and so on.  The worst was putting the ointment on her eyes at night - even though we would try to do it after she was asleep she'd still scream and thrash, so mostly the ointment ended up on her eyelashes or in the general vicinity of her eyes but almost never in them. Three days post-op the redness was mostly gone and her eyes were starting to look pretty aligned. 

Now it's two weeks since the surgery.  She's got a tiny bit of redness in the corner of one eye, but other than that is completely healed.  And best of all, her eyes are totally aligned, head tilt is gone, and she's clearly seeing MUCH better.  I think she's still having some depth perception and balance issues becuase she's a little wobbly and sometimes seems to under-reach for objects - guess her brain is still trying to sort what happened to her eyes.  She didn't have depth perception issues before the surgery, so I'm assuming this will sort itself out in the next week or so.  But she's able to make eye contact from halfway across a room now, and is definitely seeing a lot faster.  Before the surgery when I would drink from a water bottle while nursing her she would always take a few seconds before reaching for it - now she reaches immediately.  I think she's also seeing more detail.  The day after the surgery she looked at me in a completely different way than she had before, like she was seeing me in a whole new way.  She's also become fascinated with people's eyelashes - I'm thinking this is attributable to seeing things she couldn't see before.

 It's hard to tell if the surgery damped her nystagmus at all, since the nystagmus was on the mild side to begin with. The day after the surgery it actually seemed worse, but I wondered if that had to do with the fact that it was more noticeable now that her eyes were aligned.  Since then it seems to be back to about where it was before, maybe a little less.

So all told, I would definitely do it again, and I would definitely recommend Dr. Lustig, who was wonderful the day of the surgery and even gave us his cell number so we could reach him in the days after.

She looks great and I'm so happy you were pleased with your decision.