NOAH AOC

Hi all..

 

It's not often that I notice my nystagmus, although I'm aware I have it. A couple days I ago I was staring at a dim light in the dark accross the room.. and for the life of my I could not keep it still. This is the first time I've really noticed the nystagmus in action, although I'm sometimes seen to have "shakey" eyes. Anyway, I was wondering if there is a known treatment for albinism related nystagmus.

 

But, it get's more interesting then that. Ever since I was little I've been.. shakey. Mostly my hands. No matter how hard, (or how relaxed) I try to steady my hands they always shake! If I'm hold an object, it can clearly be seen shaking. It's incredibly annoying.. and I'd love nothing more than a cure. It is also a hinderence because I like to target shoot.. and having unsteady hands is a sort of akilies heel.

 

Anyway, has anyone heard of a resolution to nystagmus, and any corelation between nystagmus and unsteadyness of the hands, or could that be something completely unrelated?

 

 

 

I have herd that contacts can slow down the nystagmus, bye for now. Megan

My son is 2.5 and has OCA1a. In September he had surgery called a tenotomy to slow down his nystagmus. Their are a limited number of doctors who are trained in the surgery and have the equipment to measure the nystagmus.

Here is a eariler post with some details on the surgery and my son's outcome

 http://community.albinism.org/forums/thread/27580.aspx

 

Wow! Thaks a lot, that thread really helped. I guess I'm lucky to live in Canada, and not far off from Toronto, too! I will consult my eye doctor soon about the opion of surgery to increase my visual acuity. Thanks!

hi devin while surgery is an option it may only slow the nystagmus down a bit, if your nystagmus is in the normal range they may not think you need the surgery- im sure the surgery is mainly to correct your null point- the point when your eyes focus, so getting these nystagmus is a bit of a bonus but not a guantee. i think you should try contacts first. but talk to your doc.

eth'smum

I've actually never had glasses or contacts before, so I'm rather excitied to see what sort of improvement I can "see"! Will have millions of questions for my doc. thanks for the info.

eth'smum,

Why I have heard that contact help to slow down the nystagmus I think for my son the biggest benefit from the nystagmus surgery is his expanded depth persception. He now seems to have a fuller range of vision than before (especially in the lower/depth area) and I am not sure if contact would have also done the same (my guess is no).

Devin,

Do you find from your experience that you have depth issues or not a complete range of vision from your albinism? Just curious since my son cannot really tell me but as I said I can 100% tell he can now see things that before he could not just by his actions

From my experiences, I feel (suppose I cannot be 100 percent sure), that I have no problem with depth. That is to say, I can easily reach out and grab something.. or catch something (if I can see it well enough). In fact, how does one know that they have poor depth perception? Also I don't seem to be near or far sighted. 

 

It's just my 20/200 acuity that is.. bothersome, and I have to wonder if a change in my nystagmus would help to improve that.

hi philamom yes i agree the surgery can help with lots of other issues for sight i just thought if devins only problem was nystagmus then contacts can slow the movement right down and can help him control them better, they wouldn't help with depth perception. but it dosent should like devin has issues with depth perception.

eth'smum,

I fully agree and would say if he does not have depth issues that using contacts to slow his nystagmus may help and I hear most people who have worn contact (sometimes in conjunction with glasses) get better acuity numbers that with just glasses alone.

Devin,

It is interesting (and wonderful) you do not have any depth persception issues. My son "seems" to have issues with his vision itself (20/200) and depth until the surgery. I am looking forward to the day he is a bit older and can tell me more about his own vision and what he can see/not see and what really helps him. Right now at his young age it is just a bit of a guessing game. But as I said I can tell the surgery have given him some improvement to his vision

 

 

Hi Devin,

It's interesting you live in Fort Erie....I lived in St Catharines until last year, I now live in Ajax.

My eye doctor has referred me to Sick Kids in Toronto to be evaluated for tenotomy surgery. My evaluation is in March...although I'm an adult I think they are the only ones nearby who do the surgery.

As for knowing if you have depth perception issues....I sure do! If there is a dip in the curb I often trip as I don't perceive it, and I recently had an accident with some hot water in a pot because I couldn't tell how deep it was or close to the rim of the pot.

You could ask your eye doctor about Sick Kids...I've been referred to a Dr Kraft...for reference the phone number is 416.813.6525. The waiting time for the appt was 6-7 months.

I'm excited to hear about the fact that the surgery helps depth perception...it's a real issue for me. I pray I'm a good surgical candidate.

St. Catharines eh? I have family up there. Not far at all from here.. not to sure where Ajax is, and I'm feeling to lazy to look it up.

 Thanks for the information.. I guess I'm lucky enough to be able to preceive depth. Sorry to hear about your accident!

Ajax is 20 min on the other side of Toronto.

The accident wasn't too bad, just a bit of a burn. Thanks though!

" If there is a dip in the curb I often trip as I don't perceive it"

That was my son before surgery. Also is their was concrete and then grass he would put his foot out not sure if their was a dropoff or just a change from ground to grass. Since the surgery he has not missed a curb once and is much better playing at the playground. I hope you are able to get the surgery and it helps, please let me know. Good Luck !! 

 

philamom:

" If there is a dip in the curb I often trip as I don't perceive it"

That was my son before surgery. Also is their was concrete and then grass he would put his foot out not sure if their was a dropoff or just a change from ground to grass. Since the surgery he has not missed a curb once and is much better playing at the playground. I hope you are able to get the surgery and it helps, please let me know. Good Luck !! 

 

I always have thought my DS was jsut clumsy. I didn't even know he could have a problem with depth perception... interesting.