Anyone had a Macular Hole? (Eye related)

[indimom]

Well, my hubby took our daughter in for a vision screening yesterday afternoon because around the time school started, she began complaining of blurriness/difficulty seeing in her right eye and double vision. We were just expecting her to need glasses since both DH and I have glasses. Got a bit of a shock instead.
Apparently she has a macular hole (a hole with bleeding in/near? the retina) and has lost all 'straight-ahead' vision in her right eye. She still has peripheral vision (this is typical with a macular hole from what I understand). The doctor says this is not something that can be treated with glasses and we are being sent to a specialist to see if it can be treated or not.
I googled (how can you not) and it sounds like the only treatment for this is eye surgery with an somewhat extended/difficult recovery time where they have to remain face done for 4/5 days (or possibly a couple weeks-depends on what website you go to).
I guess I'm just looking for anyone who has had experience with this?? Any advice? Information? Questions I should be asking when we see the retinal specialist? What can I expect/anticipate??
My biggest fear is that it's too late and she won't be treatable. Surgery will be nervewracking , but better than the alternative. One website made it sound like delay could lower her chance of surgery as an option. In a younger patient, it sounds like trauma to the face or head is usually the cause. Our problem is we can't think of any face/head trauma recently.
In June of 2009, she wrecked her bike and broke her nose. If this is when it started, I'm worried it might be too late to treat. Her vision in her left eye is 20/20, could she really have gone a year getting gradually worse and not realized it until now??
Guess I'm just fretting and was hoping someone on here would know a little more about this. She is getting along with just her left eye, so I'm thankful for that, but I'm really hoping this is something we can have fixed.
The eye doctor wouldn't speculate at all, which is typical I guess. Just so stressful when you are waiting...

 

[The Mystery Machine]

I am so sorry. That sounds so awful.

I will think good thoughts for you and your family.

 

[golfgal]

SCARY. Did you turn up any experts in the field when you were googling? For something that sensitive I would want the best person in the field doing the surgery.

 

[HOGFAN]

My sister had to have the surgery for this twice. The first time it didnt take. And both times she had to lay face down for weeks. I dont think even know her vision is all that great. Sorry to hear your daughter will have to go thru this, it isnt pleasant.

 

[tlbwriter]

My sister had to have the surgery for this twice. The first time it didnt take. And both times she had to lay face down for weeks.

How long ago was that? I know someone who had surgery to repair a detached retina, and she also had to lay face down for a number of days. However, at the time, she had another option, which was to inject some substance into the eye and then have it removed when the healing was finished. She ended up needing the surgery twice, and chose the injection the second time. So I just wonder if something similar would be an option for the OP's child if she needs the surgery.

OP, I don't know anything about this particular condition, but my eyesight is similar to how hers is right now (one eye only has peripheral vision) and it's been that way all my life. It is very easy to live with, if it comes to that. I hope it can be fixed, but I want to try to ease your mind a little bit if it can't.

 

[HOGFAN]

my sister had both surgeries this year.

 

[tlbwriter]

Do you happen to know if the face down period was her only option? The person I knew chose that because it was less expensive and didn't want anything injected into her eye. Do you know if your sister had a choice?

 

[indimom]

I am so sorry. That sounds so awful.
Thanks. I'm getting past the surprise and keep reminding myself that even if it isn't treatable, she can get along fine like it is. We have a couple friends/family/church members with one eye who do fine. It just makes you worry a little about "what ifs..."
I will think good thoughts for you and your family.

Thank you.

SCARY. Did you turn up any experts in the field when you were googling? For something that sensitive I would want the best person in the field doing the surgery.

That's one of the things I'm going to look into. At this point, I think they are just going to confirm the diagnosis and give us our options. So I'll be looking into this in the meantime. I do have a friend whose husband has seen this particular doctor for a hereditary degenerative eye condition and they really like him, but I'm going to keep our options open for now.

My sister had to have the surgery for this twice. The first time it didnt take. And both times she had to lay face down for weeks. I dont think even know her vision is all that great. Sorry to hear your daughter will have to go thru this, it isnt pleasant.

This is going to sound a little rude, but if you don't mind my asking, how old is your sister? I guess I'm kind of hoping that the longer periods of "positioning" might have been for older people who take longer to heal? (One can always hope, right?)
Any advice from your sister would be greatly appreciated. There are a lot of little things running through my head in regard to this surgery. Pain/discomfort? Hospital stay? How to keep her on her stomach all night when she's asleep (she's a back sleeper so I'm afraid she'll keep rolling over)? I would love to know anything and everything. Were there positions she found comfortable during the day? One website mentioned keeping the eye dialated for weeks after the surgery? Did she have to do this also??

How long ago was that? I know someone who had surgery to repair a detached retina, and she also had to lay face down for a number of days. However, at the time, she had another option, which was to inject some substance into the eye and then have it removed when the healing was finished. She ended up needing the surgery twice, and chose the injection the second time. So I just wonder if something similar would be an option for the OP's child if she needs the surgery.
I'll be sure to ask about that if they recommend surgery. That would be fantastic if its possible. School is another issue we'll have to figure out. Avoiding the "positioning" part of it would be a real life saver.

OP, I don't know anything about this particular condition, but my eyesight is similar to how hers is right now (one eye only has peripheral vision) and it's been that way all my life. It is very easy to live with, if it comes to that. I hope it can be fixed, but I want to try to ease your mind a little bit if it can't.

Thank you. It is good to hear. I've been reminding myself of this too. My husband has two co-workers with only one eye and I grew up with a girl who lost an eye to cancer. The really have no issues, can drive and do everything anyone else can do. I just have to remind myself that anything happening to her other eye would be like being hit by lightning twice. Really not very likely.

my sister had both surgeries this year.

Thank you for sharing. I guess it still can't hurt to ask if there is another option beside the face down period. And if we have to go that route, we have to. We'll deal. I hope your sister continues to improve. One website I went to mentioned that it can take up to a year to get the full improvement, so hopefully she still isn't done recovering and will recover more of her vision.

Thanks everyone for the advice and positive thoughts. It's very helpful.

 

[timtam]

Because I have a macular hole in my right eye and have decided not to undergo a surgical procedure called a vitrectomy (for a variety of reasons), I am somewhat familiar with the affliction. It is my understanding that the development of a macular hole for those seniors like me (I'm 68) who do get one is the result of vitreous separation in the eye that is attributable to aging, but for some the separation causes a tear or hole in the macula. When young people get one it usually is the result of trauma of some kind, but that's something you should discuss with an opthalmologist after he/she examines the eye of your child. But, most importantly, very recent research has indicated that injections of a substance called microplasmin has been effective for macular problems and may even spare your child the need for eye surgery. Make sure you discuss this option with your opthalmologist.

 

[HOGFAN]

my sister is in her 60s so maybe it takes longer for older folks
I dont think she had a choice in position. I know she would lay on her stomach and look down to the floor. Read alot of books and magazines that way

 

[Denicavv]

Well, my hubby took our daughter in for a vision screening yesterday afternoon because around the time school started, she began complaining of blurriness/difficulty seeing in her right eye and double vision. We were just expecting her to need glasses since both DH and I have glasses. Got a bit of a shock instead.
Apparently she has a macular hole (a hole with bleeding in/near? the retina) and has lost all 'straight-ahead' vision in her right eye. She still has peripheral vision (this is typical with a macular hole from what I understand). The doctor says this is not something that can be treated with glasses and we are being sent to a specialist to see if it can be treated or not.
I googled (how can you not) and it sounds like the only treatment for this is eye surgery with an somewhat extended/difficult recovery time where they have to remain face done for 4/5 days (or possibly a couple weeks-depends on what website you go to).
I guess I'm just looking for anyone who has had experience with this?? Any advice? Information? Questions I should be asking when we see the retinal specialist? What can I expect/anticipate??
My biggest fear is that it's too late and she won't be treatable. Surgery will be nervewracking , but better than the alternative. One website made it sound like delay could lower her chance of surgery as an option. In a younger patient, it sounds like trauma to the face or head is usually the cause. Our problem is we can't think of any face/head trauma recently.
In June of 2009, she wrecked her bike and broke her nose. If this is when it started, I'm worried it might be too late to treat. Her vision in her left eye is 20/20, could she really have gone a year getting gradually worse and not realized it until now??
Guess I'm just fretting and was hoping someone on here would know a little more about this. She is getting along with just her left eye, so I'm thankful for that, but I'm really hoping this is something we can have fixed.
The eye doctor wouldn't speculate at all, which is typical I guess. Just so stressful when you are waiting...

Hi, indimom,
I appeared to your post as I was diagnosed with traumatic macular hole about two months ago and I wanted to ask what happened to your daughter and did she manage to return her vision as I am very afraid. Thank you very much in advance.

 

[indimom]

Wow, this thread is a blast from the past.
Sorry Denicavv, I can't answer your question. After going to see the retinal specialist we found out the eye doctor had incorrectly diagnosed our daughter and she had a different condition with a different treatment.
But, someone else may come along and be able to give you some information. I hope everything turns out okay with your vision.

 

[Denicavv]

Wow, this thread is a blast from the past.
Sorry Denicavv, I can't answer your question. After going to see the retinal specialist we found out the eye doctor had incorrectly diagnosed our daughter and she had a different condition with a different treatment.
But, someone else may come along and be able to give you some information. I hope everything turns out okay with your vision.

Thank you very much, hope your daughter is okay too.