NOAH AOC

Hi all!

I am nearly convinced after reading through this site and all the encouraging postings!

I was wondering if anyone could answer some other questions for me.

My 4 year old daughter, Alicia, has congenital nystagmus with a pretty serious head tilt.  Dr's are pretty sure is it is caused by ocular albanism.  I have seen Boston doctors and no one has steered me in the direction of surgery.  After reading about Dr. Hertle's work, I scheduled an appointment down there. 

I guess I am mostly concerned about the recovery.  What will I be putting her through?

Any other info that anyone could give would be great!  I also have never talked to another parent of a child with Nystagmus and would love to at some point.... just to brainstorm.... if there are similar sensory issues, balance, etc.....

Let me know if anyone has any info.... or would like to chat further.

Thanks,

Jenn (New Hampshire)

Hi Jenn

My son had surgery with Dr Hertle. If you search my user name you will find a ton of posts about his surgery and recovery. He was 2.5 when he had the surgery

We went to Dr. Hertle at the beginning of this month and my daughter 2.5yrs old is scheduled for surgery.  I am still nervous but he can give you so much information and they are so interested in the children.  If you read the surgery concerns post everyone was so kind to down grade me from basketcase to just nervous!

Does anyone know how long Dr. Hertle has been performing the operations?

My suggestion is to contact Dr. Hertle himself and ask him (his office staff) to provide you with the fact sheet on tenotomy surgery.  He must have something written out that outlines the 4 types of tenotomy surgery (he talked about this at the conference he spoke at), the results of his patients, how many patients he has performed the surgery etc....

He presented all this information at the conference this past summer so I would assume he would be happy to share it with anyone who is interested.  His research (the surgery) is part of a NIH grant.  However, I think the funding was cut so I am not how he is working that now.

Joanna

Another thing:

If you want to "see the results" of the surgeries, go to PubMed or just search for Richard Hertle and tenotomy surgery.  If you do it right, you will get a glimpse of his publications that explain (in detail) how many patients and the results.  However, these are professional publications so the language may be alittle difficult for a non-researcher.

Also, Dr. Dell-Osso works along with Dr. Hertle with the eye recordings and such.  He is not a PO (he is a Ph.D) so he doesn't perform the surgery, but he is well educated in the process and procedures.  Look for his name and publications as well.

Because Dr. Hertle is a professor (at Pitt) as well, he writes publications all the time. This is a great way to find out the facts.  These articles are peer-reviewed and the cornerstone of working in a research field and/or university. 

Remember, our kids have congential nystagmus (they were born with it), so don't confuse it with Acquired Nystagmus and the other types of nystagmus.

Joanna

Thanks for the info, Joanna.  I am still on the fence regarding the surgery for my Zachary.  I have done some preliminary research on the web, but haven't had time to read any good articles, just Dr. Hertle's bio stuff.  I found an interesting site that actually broadcast a tenotomy surgery over the web in March of 2007.  I haven't watched it yet, but if anyone is interested, the site is www.or-live.com/akronchildrens/1835.

I watched the video, it is informative but I couldnt watch the surgery. Thanks

Hello Jenn,

I have a daughter who has ocular albanism, I also went to Boston, I went there as soon as we knew something was wrong with Brooke's eyes.  Every visit I asked the doctors to tell me who was doing research on Nystagmus and who was the leading doctor in it...they never once told me about Dr. Hertle.  I was so mad when I found him on my own.  My husband, daughter and I went to the conferance this summer and had an appointment with Dr. Hertle, he was amazing, he gave her a prescription for glasses, no other doctor would even enteratian this idea, and said she was a canidate for the surgery.  I have talked to other parents who's childrent have had the surgery and feel confident it is what is best for Brooke...none of these decisions are easy.  I live in CT and would love to chat anytime.

 Thanks,

Kerri

Hi Kerri,

Thanks for the post.  I have not had the chance to check this web site in a while. 

We went to see Dr. Hertle about 3 weeks ago and he told us that my daughter, Alicia, is a candidate for surgery. 

He said that it is a "slam dunk" for her because she has a pretty severe head turn.  She is actually in OT for it and it is increasingly effecting her core strength and posture.  It is difficult to watch her sit on the couch sideways just to see the TV without having to turn her head. 

Six months ago, a developmental optomotrist prescribed glasses with a prism.  This improved the head turn for about a month until her eyes adjusted back.... and now they don't work anymore.

It also causes her so much fatigue throughout the day that she has a lot of melt downs.

I tape recorded Dr. Hertle's consultation just to have all the information handy.  He said that she doesn't just have ocular albinism, but it is systematic. 

She has blond hair, blue eyes, (crystal blue), and fair skin. 

I am also very disappointed in the doctors in Boston.  We have been to NEMC and Childrens.... where, as an infant, she was diagnosed with opsoclonus ..... probably, they told us, caused by a neuroblastoma.

After several tests and a year later, the diagnosis was changed to congenital nystagmus.

No one has EVER mentioned surgery. ... even when I had specifically asked about corrective measures, Dr.'s told me there were none.

I found Dr. Hertle's information myself as well.

She is scheduled to have the surgery on May 13th with Dr. Hertle.  I am beginning to get very nervous.... I am trying very hard to hold it together, but , to be honest, get very emotional at the thought of  ..... 1) her in surgery, under anesthesia, alone,.... and 2) the fact that she has had to deal with this for almost 5 years when something could have been done sooner.  

I just bought her the book, "Curious George Goes to the Hospital".... which is GREAT!  I will start reading it to her about 2 weeks before the surgery.

I would also love to chat some more , as well! 

ps..... has anyone noticed children with nystagmus NEVER getting dizzy????

In OT, Alicia can spin around in circles over and over, and NEVER get dizzy!!!! Her occupational therapist is amazed by this!!!

She also seeks out that kind of sensory play.... spinning!

Jenn ( Mom from NH)

Hi Jenn,

Lexie will be 3 in June.  Her surgery is April 8th.  I think I might need a sedative.LOL  Wow that was such a good idea taping the appointment.  I wish I did that.  My kids were acting up so it was hard to actively listen.   I have been taking her to the chiropractor for her head tilt.  I am going to try to find that book at the library.  Your daughter is blessed to have such a smart mommy!  I hope Lexie isnt frightened by the whole ordeal. 

I would have been really upset if the doctor said neuroblastoma too!  How horrifying!  My dd Ped. noticed the nystagmus and was alarmed, made us an immediate appointment with the opt.  When we followed up with her she had no idea what nystagmus was and thought it was something neuro too. 

 I am so nervous for my dd but Dr. Hertle said her spine, muscles, and neck would have to be corrected later on if we did the surgery later.  There was absolutely no pressure but he fully explained.  So I try to focus on that.  Casandra also started a group on cafemom if you are interested.

My dd gets dizzy a lot and just falls over sometimes.  I do not know if it is her allergy, asthma, and meds or her eyes?  So I would not be a good comparison.   I am going to try to get video of Lexie's eyes before and after the surgery.  She is 2 so if she cooperates.  I think they did this with Henry and his results are on youtube.com

Well I have someone to be nervous with, whether that is good or bad I don't know.  LOL

HI ROXANNE--GOT YOUR EMAIL...KENNEDY DID HAVE AN EYE INFECTION...HER SYMPTOMS WERE A RED EYELID AND EXTREME LIGHT SENSITIVITY ALONG WITH A "DROOPING" EYELID--LEFT EYE.  SHE WAS ONE WEEK POST OP AND THIS ALL HAPPENED.  WE IMMEDIATELY TOOK HER IN THE NEXT DAY TO SEE DR HERTLE AND IT WAS INFECTED.  SHE WAS GIVEN VIGAMOX EYE DROPS FOR 2 WEEKS AND AN ORAL ANTIBOTIC FOR TWO WEEKS.  ABOUT ONE MONTH POST OP HER EYELID WAS STILL DROOPING AND SHE COMPLAINED THAT IT HURT AND THE EYEBALL WAS GETTING RED SO WE PAGED DR HERTLE BUT HE WAS IN ARIZONA. WE HAD TO SPEAK WITH THE ON CALL OPTHOMOLOGIST WHO WAS ALOT OF HELP...WE TOOK KENNEDY IN THE NEXT MORNING AND DR HERTLE'S ASSOCIATE DIAGNOSED KENNEDY WITH A "GRANULOMA" WHICH IS BASICALLY A BUMP WHERE THE SUTURES ATTACH TO THE EYE--SOME KIDS GET THEM AND SOME DON'T...SHE WAS GIVEN A STEROID EYE DROP FOR THREE WEEKS TO SHRINK THE BUMP AND IT WORKED WONDERS.  SHE HAD A TOUGH TIME THROUGHOUT THE WHOLE RECOVERY PROCESS AND PROBABLY WASN'T HERSELF FOR ABOUT ONE MONTH.  MY HUSBAND AND I REALLY FELT GUILTY THINKING THAT WE PUT HER THROUGH THIS AND SHE WAS MISERABLE BUT IN THE LONG RUN-SHE IS SEVEN MONTHS POST OP-IT WAS WELL WORTH IT.  HER VISION AND CONFIDENCE HAS IMPROVED TREMENDOUSLY...PLEASE LET ME KNOW WHAT YOUR DAUGHTER HAD AND I WILL KEEP HER IN MY PRAYERS...

Lexie had a bit of a go.  She didnt open her eyes for 3 1/2 days until we got home or a BM.  We got home and I was leading her around. Went to wash my hands and she was gone.  She had hidden herself upstairs in my room, in our bathroom, and in the shower stall.  She did not want me near her for about 2 hours.  She had surgery on tues.She had a problem with her asthma after surgery then on thurs morning she was throwing up with her eyelid swollen and red.  We calld the # but they just have normal office hours. since it was 4:30a.m. we brought her to the ER.  He gave her an antibiotic and upped the eye cream to 3x a day.  She is still having some swelling on her eye and the lid on the left is still a little swollen too so we are waiting for a call back from the dr. office now. I hope I do not have to go back to Pitts. but will do what needs to be done.  I can say she keeps tilting her head to see things then you see her slowly straighten.   She is still cranky.  Thank you so much for the info.  At least it gives me an idea of what to look for. Info makes me feel better than being lost in the not knowing. I hope I am not scaring anyone, I just needed  some insight and maybe a sedative. 

 How long did you keep your daughter on pain meds?  Could you see the granuloma?

Kennedy also did not open her eyes for 3 days straight...her sx was also on a tuesday and she didn't open her eyes until saturday when my mother in law came to visit.  she would just lay in my bed which was normally off limits all day with her eyes closed.  she would eat in bed and we would have to feed her b/c she couldn't see.  on thursday she ventured out to the tv and we would put in her dvds to watch and she would just lay on a pillow and listen-refusing to open her eyes.   my husband and i were beside ourselves...we would have to cover all of our windows with blankets if the sun was shining b/c she was sssooo light sensitive-dr hertle said that the infection caused some of the sensitivity-she didn't have any problems with the anesthesia-thank goodness.  we only gave her the tylenol with codeine on the second night b/c she said that her eyes were really sore and then just gave her regular tylenol for about two more days.  Again, she did experience the swollen eyelid and that is what prompted us to call.  Luckily we only live about 45 mins from Pittsburgh, so it wasn't a problem to get her in.  We used the eye drops instead of the cream just b/c it was easier to get into her eye...She honestly was cranky for about 10 days and then she finally started coming around.  Then the granuloma appeared.  It was in the outer corner in the white of her eye.  You could see it if you really looked but it was hard to get a good look b/c of the nystagmus constantly moving her eye.  It looked like a red raised bump and i'm told that it feels like something is in your eye-like sand.  Kennedy was rubbing her eye alot for about a day and that's when it got worse and we knew that something again wasn't right.  The steroid drops cleared it right up-it took about two weeks straight of drops 4 times a day.  She has had no problems since and at her 6 week check up she got the all clear...and to make matter worse, i was 8 1/2 months pregnant when all this started...talk about stressed out.... hope this helps...

Thank you to everyone for sharing your experiences with the surgery.  Its great information to share.

Has anyone had any problems getting their insurance to approve a visit to Dr. Hertle?  We'd like to take her straight to Dr. H instead of visiting a local PO... not for the surgery right away, but just to visit THE doc who we consider to have the most experience with albinism and nystagmus.  But I'm a bit nervous that the insurance company is going to try to say its unnecessary, even though there's really no one in our area who is highly experienced in these arenas.  

 Thanks,

Megan