NOAH AOC

We have just gotten back from visiting Dr. Hertle and he said my dd is a candidate for surgery.  Due to her head tilt, headaches, eye pain, and limited vision, we decided it was for the best and scheduled to have it done in April.  I am very concerned, as I am sure most parents are, about any surgery for their children and was looking for any opinions from others to make sure we are doing the right thing and would really appreciate any helpful advice.

I was like you about the surgery, and him having it so young.  But after hearing from alot of parents on here, about how much of a difference the surgery made on their child.... I cannot WAIT for Cash's next appt in april..... we are discussing him possibly having the surgery... and now I am ALL FOR IT.    Good luck w/ everything.... IM sure you will be very happy in the longrun.

Roxanne:

Surgery is scary!  I know when Zachary had to have an umbilical hernia repaired when he was 3 months old, I was pretty much a basket case.  Even given that, I would go forward with the surgery if someone as excellent as Dr. Hertle recommended it.  I have a feeling you will see a good improvement in your daughter's vision. Especially if her head tilt is severe enough to be causing headaches.  It's always tough to know if you are doing the right thing, but I know you are in good hands with Dr. Hertle.  Keep us posted!

 

My son had surgery with Dr Hertle in Sept 2006 when he was 2.5. If you look up my user name you can see my past comments on the surgery and outcome. I was very scared BUT in the end it was one of the easiest and best things we have decided to do for our son and his vision. Please feel free to ask any questions. Your daughter is in good hands with Dr Hertle

Thank you, I was just reading your past posts, Philamom, and realized you are near my husbands work.  He works in Blue Bell.  I was wondering where Dr. Wilson is located?(I think you wrote dr. wilson who knows Dr. Hertle?)  Her other doctors would not give her glasses until 4 years old.  I have 4 sisters and we all wear glasses. I found which one had my daughters prescription and had her try them on.  She was pointing to everything far away.  Dr. Hertle said he would check her eyes after surgery but I don't know if he can give me a prescription right after surgery.  Does anyone know? We upped our insurance plan for this year so I would like to get her glasses soon after surgery for her and so I can drop the insurance back down.   I read from your post that your son was running around after surgery. My daughter is 2.5 now so about the same age.   We will be there 3 days pre-op, then surgery, then he will see her the day after for follow up.  From your experience, was your son able to handle the car ride home the day after surgery.   Dr. Hertle really was great.  I told him I had my son's eyes looked at to by another opthamologist and he had never seen anything like it.  Since then I have been reading about a leaky gene type of albinism but anyway, Dr. Hertle looked at his eyes maybe partially because my ds was feeling dejected because his sister was getting all the attention (he is really good with the children) and said he has very slight nystagmus.  When he was looking at smaller things he tilted his head just slightly down.  I never noticed!  The people working with him are eager to learn and take so much interest in her nystagmus.  I really found a lot of comfort in their knowledge and manner.  I am still a nervous wreck but will get through.  Did your son have any idea was going on?  My daughter is pretty resilient and is usually a good sport although she still hates her asthma medicine.  Dr. Hertle also explained with her head tilt she would make it more of a habit and it would effect her neck and her muscles and if we wait till she is older it may cause her other problems.  Did anyone get tested for HPS before the surgery?

Ryker's dr. suggested nystagmus surgery at his last appointment because he puts his chin down to get to his null point.  She doesn't think it will be necessary for a couple of years, he's 15 mos. old, or when he needs glasses, whichever comes first.  I know how you feel though, surgery is scary and I'm already worried and researching like crazy!  I'm sure your daughter will benifit tremendously, I haven't found anyone that the surgery hasn't been successful.  Good luck!

Kelli

I think having the surgery was the best decision we ever made! It was harder on us than our dd! I think you did the right thing!

I just had to write and say that your little girl is absolutely adorable!!!

Roxanne, I am very close to Blue Bell and my mom's lived there. Are you in PA?

Dr Wilson is in Paoli, Pa and has worked with many patients with albinism and with Dr Hertle. We have not seen him yet (we go in March) because we have been seeing Dr Hertle but I know many local parents who use Dr Wilson and are very happy with him.

My son was 100% fine 2 hours after the surgery...doing everything like normal, running, eating, playing. The ride home was just like a normal ride without a surgery would have been. The only difference was his every looked very bad. He did not understand anything except we just said Dr Hertle was going to try to make his eyes better. I feel it was a good age since he was not a "baby" but did not really get everything that was going on and have the opportunity to be scared. Good luck !! 

 

Yes, we live in Morgantown.  Paoli is great!  I delivered there and have a doctor and dentist we use there.  I am glad to hear how well your son did, I was worried about that. 

 

Thank you Janice, how kind of you to say!

My son Brian and I have just retuned from Pittsburgh where Dr. Hertle performed surgery on my son who is now 14 yrs old.  And all I can say is it was the BEST thing that we have ever done for him.  I just wished I had known about Dr. Hertle years ago.  Brian went from 20/200 to 20/70 with very little nystagmus present.  He will now be able to be fitted with contacts after his eyes heal.  Brian now sees things he never saw before, like street signs will the car is moving, TV from the couch, reading a book at a "normal" distance from his face...he no longer kisses a book...he LOVES the morning newspaper...it has been less than a week since his surgery and every day since, he sees something new in the world around him.  Last night I caught him reading at 1130...the driving training manual!...Roxanne, from one mon to another....you are doing the right thing, and will be in wonderful hands with Dr. Hertle.

Wow - that is awesome to hear! Thanks for sharing Brian's success story. One more reason for me to consider taking my Zachary to see Dr. Hertle!

Thanks brians mom!  It is great to hear from a teenagers point of view.  That was really insightful.    I took my daughter to the playground in the mall yesterday and she wrapped herself around a post at the top of the slide and wouldnt move.  When I went to get her she fell apart crying because she couldnt see.  She wanted to play but couldnt negotiate her way around the other kids.  Just another reason why she needs it and I am so thankful that she has this option.

Thank you all for the encouragement.  I truly feel considerably better. 

hello all.

i m from india

i m 17 years old and have OCA

i m interested in this surgery.

can someone please help me regarding this.

please tell me HOW MUCH BENIFIT DO I RECEIEVE AFTER THIS SURGERY?

CAN I DRIVE CAR IN NIGHTS AFTER THE SURGERY..(sorry for this silly ques but i need to know)

also pls tell me how much this surgery costs?

and how much time dose this surgery takes?

 

atin- this is a post from an adult who had the surgery recently

http://community.albinism.org/forums/t/6642.aspx

My daughter is scheduled for surgery.  She will be there 3 days. A pre op appointment, outpatient surgery, and post op.  I think someone mention reduced airfare for medical but I don't know if that is an option from India.   I also remember someone mentioned coming from very far away and everything was done in one trip with Dr. Hertle.  I hope this helps.