NOAH AOC

Hi everyone. I had posted about a month ago about the fact that I was scheduled for strabismus/nystagmus surgery on Sept 26. A number of you had asked me to let you know how things went...so here goes.

I'm 35. I know the surgery is usually done on children, but my surgeon (who was EXCELLENT by the way) felt it would be of benefit to me at this age. He works out of both Sick Kids and Toronto Western Hospital.

My surgery went amazingly well, it really couldn't have gone any better. 10 days post surgical the swelling and redness are daily decreasing, only an incredibly annoying itiching feeling remains, but that is normal due to sutures and healing.

I'm already noticing differences in my vision, although full results aren't known for about 6 weeks as that's how long full healing will take. However, I've noticed impovement in my depth perception, contrast ability between light and dark, and, in my post op appointment, I saw a letter on the eye chart I'd never been able to see before with my left eye. It may sound small, but it's a start and I'm looking forward to what the next four weeks will bring.

My eyes are also incredibly straight, and my nystagmus is noticeably reduced. It's funny..both my head and my eyes know something is different, but it feels like it's taking time to put it all together. My surgeon says this is normal as the brain and eyes adjust to new positions and new optical input.

Anyway, just a brief update. I know the choice might not be right for everyone, but it sure was for me! I'd do it again in a second.

thats wonderful to hear!!!!!  Im glad everything worked out well for you~!

hi,Sunshinegirl, Congradulations on the success of the surgery, I am really happy for you. I am in GTA as well and my newborn daughter has Albinism, I am wondering if you could share the name of the surgeon with me just in case for the future. thank you very much

That is wonderful news !! Please keep us updated on your progress

My son had the same surgery exactly a year ago when he was 2.5 and we also noticed a hugh difference in his depth perception and nystagmus, in addition to additional benefits from the surgery.

Hi Zimol,

His name is Dr Stephen Kraft out of Sick Kids. He is an excellent surgeon, and also has a wonderful bedside manner. I was incredibly impressed with him.

Hope that helps.

Thank you very much, sunshinegirl, and please keep us posted on your progress.

My daughter's Ped just made a referal to sick kid, we haven't heard anything back from them yet, I guess there maybe a long waiting list

Well, it took me 8 months to get a consultation date, and then 7 months to get a surgical date. I don't know if the process is any faster for young children. My thoughts are with you. I'll keep you posted. My next check up is in 7 weeks after full healing has taken place. They'll be better able to assess visual changes, gains etc at that time.

I am very curious about your eye surgery.  I had eye surgery at 18 months old, but I still have a lot of nystagmus and strabismus.  I can read 20/50 for both eyes.  I was curious to know if you ever had eye surgery before?  I was told that having this surgery done too much can affect nerves and muscles and cause a patient to lose vision as a risk.  Why did the surgen decide to do the surgery?  Did he do it because you never had it done before?  I am really curious about your surgery, and I might even look into it myself.  I could have perfect vision, if my eyes would just be still.

Does it help with eye strain? My eyes hurt and they move too much. Sometimes i wish i could not see. I just learned about this surgery yesterday and i am exited to reaserch more.

Hello to everyone. I just had my 2 month re-check after surgery.

 Good questions from you all. No, I'd never had the eye surgery befrore. It has slowed my nystagmus and basically eliminated my strabismus altogether.

The reason it was done now was because it wasn't available when I was a child. I heard about hte surgery and investigated it. After a series of tests my doctor concluded I would be a good candidate for the surgery. The strabismus was becoming more noticeable and it's nice to have straight eyes for the first time.

It's been beneicial to me. My depth perception and light and dark contrast are greatly improved. My reading vision has increased fairly significantly and even my distance vision is a tiny bit better. Not enough to change my numbers (20200 left, 20/400 right).

It's interesting seeing in "stereo vision for the first time, and it's taken some adjustments. My doctor today was saying the reason why they like to do this surgery when kids are young is because they don't have the years of brain training adults do and they adjust more quickly and easily to the new vision than adults do. They tend to adjust faster and bounce back faster.

Some days are really good, some days I find the stimulation of both eyes working together a little overwhelming....but on the whole, it's been incredibly beneficial. The doctor says things will adjust over time and at 9 weeks post surgical I'm right at the tail end of full healing. I"m to be reassesed in 4-6 months and there may be more improvements at that time.

As an adult you really have to be ready for a period of adjustment....some dizziness, headaches, colors seeming brighter, but it was so worth it and I'd do it again in a second. As my doctor said, I spent 35 years seeing one way....it'll take a little time to adjust to how "normal" people see. And yes, it has slowed my nystagmus, people who look at me and know me can tell, and that has been a help too.

Hope that answers any questions. Feel free to write and ask anything you want. I'm open to any questions about anything re the whole process.

Hi Sunshinegirl,

Thanks for your info....my son goes in for eye muscle surgery for address strabismus in a couple of months (he's 16 months of age).   Is it common that the nystagmus will decrease with the surgery?  Can you also confirm there is no involvement of the optic nerve...so there is limited to no risk  for vision loss in the surgery?  From what I've read the operation is done on the sides of the eyes....we meet with the Dr. in a couple of weeks to go over all of this.  Just looking for your thoughts.

Thanks.

Hi Wil's dad,

From what my doctor told me, whether or not the nystagmus diminishes depends on the type of surgery that is done...whether 2 muscles on each eye or 4. I had all 4 done and yes, my nystagmus is slowed....it is definetely not eliminated, but people who know me comment that they can see that it has slowed. I don't think they can guarantee this, but I think the odds are better if 4 muscles are done.

No, there is absolutely no involvement of the optic nerve, only the muscles. My doctor told me the only risk for vision loss was if the sutures got infected or something like that. The risk of vison loss with this was 1 in 50,000. However I did have antibiotic and steroid drops that I had to put in for three weeks numerous times a day, and I had no problems with this.

 I don't know if anyone else has experienced this, but I do have one suggestion. Because the sutures are on the whites of the eyes, my eyes werei incredibly itchy, they were tender, but more itchy than anything, I constantly felt like there was something in my eye that needed to come out and at times it felt like someone was poking my eyeball with a stick. Anyway, I was really vigilant to not scratch at my eyes, until one night 6 days after surgery when I woke up in the middle of the night scratching at my eyes. I had actually started to do it in my sleep and it woke me up. Fortunately it did no damage, but I did it two nights in a row. My solution was to go to the drug store and buy one of  those sleep masks, like the ones they give you on the plane. I figured that would at least ensure I couldn't get at my eyes without a lot of work during the night! It worked perfectly.

Anyway, like I said above, it was definetely worth it and I would do it all over again. Hope some of that info helps. All the best on your son's surgery.

The specific name of the surgery is called a tenotomy. Only a small number of doctors have the eye movement recording equiptment and are trained and skilled at this procedure. My son was seen and had surgery with the doctor who helped to develop the procedure, Dr Hertle

 Goggles called ocular motor electrophysiology or eye movement recording use sensors that allow the ophthalmologist to record eye rhythm. By doing that, doctors can determine the brain's malfunction, which is where the real problem happens to be.

Graphs show the right and left eye movement. Hertle corrects the problem by surgically repositioning the eyes by cutting three of six tiny muscles that control each eye's movement.

"We take a small hook, put it under the muscle to lift it up, then I put a stitch through it, cut it off and move it to a new position," said Hertle.

Cutting the muscle slows the nystagmus. Moving it changes the eye position

hi,sunshinegirl

I am glad things worked out for you so well and happy for you!

I am just wondering if the procedure you had is the same as the one philamom mentined in her post, did they record your eye monment using a gear first before the surgery? thanks

I've had mine done for like a year and what a rush I can see everything normal instead of looking at the left side of my big nose LOL. Hopw you doing good. Just do what the docs tell you.

Cheers

dragnfly50