Macular Hole - Lots of ???s

[indimom]

I'm here because a friend on the WISH board said she thought there were folks on this board who might have information on this. (I did a search and found a couple old threads, but thought it would be better to post myself.)

My daughter was diagnosed this week with a macular hole by the family eye doctor. She has lost all "straight-ahead" vision in her right eye, but still has peripheral vision (which appears to be the norm with this condition?). He has referred us to a specialist to find out if she is a candidate for surgery. I did some Google searching and found out what the surgery and recovery entails, but I guess I'm really just looking for any information from people who have been through this.

We're a little in shock right now. She started complaining about her vision at the start of the school year (August) and we didn't rush her appt. with the eye doctor because we just thought she would need glasses like her dad and I. The eye doctor gave us the impression that at her age, trauma to the head/face would be the most likely cause of this, but she has had no recent accidents. The only major accident she's ever had was a bike wreck in June 2009 where she broke her nose. He seemed to think that was too long ago to have caused this?? Anyway, the google search led me to believe that this is only treatable if caught "early," so I don't even know if she will be eligible for the surgery.

For those who have experience with this, how was the surgery? Painful? Long? Did you have to stay in the hospital overnight?? What about the face down recovery? How long were you face down? Were there things that helped? I would think your back/neck would get really tired/sore. How did you keep yourself on your stomach all night? (I'm afraid she'll roll over in her sleep.) Maybe I'm being a little premature for asking, she may not even be a candidate for surgery. But I'm hopeful we can get this fixed and restore at least some of her vision in that eye. How likely are complications with the surgery, the websites listed possible complications but didn't say how likely they were...

She's a 7th grader this year and I'm a little concerned about the time she will be off school also. If the surgery is not time-sensitive, what do you think of doing it over a holiday like Thanksgiving? Would you do it or would that just make the holiday miserable?? My hubby thought this would be better than missing too much school, but I just don't know.

Sorry for all the questions. I know we'll be seeing the specialist, but the not knowing anything is driving me crazy, and the eye doctor wouldn't really tell us much (I guess that's typical though). Any information, suggestions or advice would be greatly appreciated.

Susan

 

[DisneyKevin]

Hi Susan,

I have had several eye surgeries in the last few years, but for something very different.

Both of my retinas detached and I had reattachment surgeries.

Unfortunately, I have no knowledge of the procedures or recovery associated with macular hole surgery.

I wish you all the best and I will keep your family and your daughter in my thoughts and prayers.

I can tell you that my iPhone / iPod touch got me through the face down recovery period. It was easy to hold and we loaded it with movies and TV shows that I could watch.

I'm sorry that I cant be of more help.

Kevin

 

[jcb]

Susan,

I haven't had anything close but I did have something less serious that caused me to go to an eye specialist last summer. The thing that struck me was how my regular opthamologist's forecast was not even close to what the specialist thought would happen. I hope you find a specialist who can help your daughter get through this. I wish you all the best.

 

[HillPete]

A good friend of mine had a similar surgery this summer. She was face-down for 8 days and managed pretty well. I took Kevin's advice and had her son (also named Kevin!) load up his laptop with movies for her and she put the laptop on the floor by the side of her bed and hung over the edge. (not sure if that made sense )

Also, she's a little older than your daughter. Her macular hole was found after cataract surgery, so there's no way to know how long she had it before surgery. Her eyesight is now perfect!

Good luck!

--Hillary

 

[indimom]

Thanks for the replies. I guess I'm just being a "worried mom" even though I don't like to think of myself that way. I appreciate the information.

 

[Kimberle]

I don't have any knowledge, but want to offer you lots of prayers and positive wishes. How scary to be going throught this with your young dd.

 

[challer]

I have to concur with a poster above. I wouldn't go crazy about it until you see the retina specialist. A macular hole in a 7th grader is unbelievably rare, and it is always possible that your family eye doctor (ophthalmologist or optometrist?) may not have the tools needed to diagnose whether it is actually a hole or not.

I am an eye surgeon, and I know the surgery quite well, but again - confirm the diagnosis first before worrying about the nitty gritty of a surgery that your child may not even need.

Not that this pertains to your family eye doctor, but you have no idea how many doctors out there lack the tact and people skills along with the clinical knowledge required to be a caring doctor. You would not believe how many patients I've had to "talk down off the ledge" after a local optometrist says to every patient with a larger than normal optic nerve, "You may have a brain tumor. Go to this ophthalmologist to get further testing."

Feel free to PM me if you have any specific concerns.