My 14 year old daughter was diagnosed today as having holes in both her retinas.I’m assumming she has macular holes, but I was in shock and really don’t remember if that’s what I was told.She has no symptons as of yet so I guess that’s one good thing. She will be seeing a specialist,but I’m having a heck of a time finding any information about this condition in children.Most of what I have been able to find has stated that although the age for this varies it is mostly in women 60+ I was wondering if any one has any comprehensive information on this condition, or knows a good website with such info.Google was the first place I checked,but I’m not an expert googler like some of you. This discovery follows on the heels of my youngest daughter having a suspicious mole on her back that is getting removed Tuesday. I am very frightened right now and the more information I can get the better I will feel. Thanks for any help.
Did they mention any particular disease? There are a lot of different macular degenerative syndromes. Presentation at 14 is consistent with many hereditary and some acquired and metabolic retinitis pigementosa syndromes. Did you hear mention of a disease name? With some help from Kanski’s Clinical Ophthalmology, I can think of a few diseases with skin and retinal findings. Do any of these sound familiar: typcial or atypical retinitis pigmentosa, Bassen-Kornzweig disease, Stargardt macular dystrophy, neurofibromatosis, Gorlin-Golz syndrome? Could you tell us a little bit about the mole, about how she first got symptoms, about any other symptoms? Do you have any family history of retinal or skin problems? If so, if you could describe how the affected relatives are related (include paternal vs. maternal), I could venture a guess on the inheritance pattern. The reason this is important is that these kind of diseases have a wide range of treatment options and outcomes, and I would hate to give you wrong information or point you in a wrong direction.
I will try to point you to some information if you could be more specific. I send my best wishes to you and your daughter.
Is your child extremely near-sighted? The condition you describe sounds more likely to be Myopic Degeneration. Rather than Macular Degeneration which places holes in the line of central vision, Macular Degen. shows holes forming mainly in the peripheral vision. But, blood vessels may bleed periodically causing a “spotty” loss of vision anywhere - such as letters disappearing from a page of text or the numbers disappearing on a digital clock. (Is this how you discovered her holes?) It scared my wife, but it was a temporary flare-up. Still, contact a doctor whenever such odd events occur.
My wife (age 35) was born extremely near-sighted. These side-effects didn’t kick-in until college. There are specialists in opthomology trained in the diagnosing and caring for those with this condition. Yes, usually the elderly develop this - so you may need to seek out an opthomolgist dealing in geriatrics.
Check with the diagnosing doctor to confirm the EXACT name of your daughter’s condition. And, see whom s/he might recommend. Also, don’t rule out seeking help from eye specialists at Childrens’ Hospitals, if you want a more detailed exam and deeper guidance concerning what options may be out there. (We haven’t yet gone that route ourselves, but my wife is in good care.)
One last note: The docs may periodically require a fluoroscene dye injection to photograph the present condition of the retina’s blood vessels. This will help keep a record of the changes to the retina - and help the doctor better assess the condition.
In a nutshell,
- Jinx
Ah, bingo. Macular hole differential diagnosis: idiopathic (no known cause), high myopia, blunt trauma, solar retinopathy. Jinx is absolutely correct with the association with myopia. If vitrectomy is performed, it is 60% successful at closing the hole and 40% successful at restoring some visual acuity (two lones on a Snellen chart). Downside is that the patient has to lie face down for at least a week postoperatively (along with the other risks of the surgery).
I thought patients were supposed to be face-down for two to three weeks. I guess it depends on the procedure.
As an aside, I can’t imagine having eye surgery under local anesthesia. I mean, just about any other type of surgery would be fine, but with eye surgery, there’s no way not to watch what’s happening. Of course, I don’t wear contacts because I don’t like the thought of having to poke myself in the eyes, so maybe I’m just overly squeamish.
Yeah my buddy on his ophtho rotation was telling me about how they administer the ganglion block to anesthetize. Not pretty. For the uninitiated, it involves basically a long needle stuck above and around the eyeball. I can’t imagine why anyone would be alarmed by that… Certainly intimidating, and I can’t imagine that they would do it without conscious sedation (Versed or some other amnestic), just to relax the hell out of the person on whom they are operating.
Whoa! Wait a second, here! Laying face down for days??? That’s far too extreme! I’ve never heard of that! Laser surgery can be done to stop major leakages and/or trim off little rogue “nubs” stemming from blood vessels - prime candidates for leaks.
While my wife has never needed a laser to stop a leakage, others I’ve known undergoing a similar procedure had such restrictions after laser surgery.
- Jinx
You may be thinking of cataract surgery, perhaps? I hear the head needs to be immobilized for a short period later. - Jinx
Macular holes, however, cannot be repaired with laser surgery. The laser will, more likely than not, cause further damage to the retina.
You have to be face-down because they insert an air bubble between the vitreous and the retina. As long as you’re face-down, the bubble applies pressure to the macula in order to seal the hole.
Hmm…I was under the impression the physical “holes” are caused by the laser itself burning out a tiny piece of the retina…usually balanced out in your total vision assuming the other eye’s retina has no hole in the same spot.
The “apparent” holes first experienced by the patient are from the leaks (hemmorages) in the blood vessel(s) feeding the eye.
Granted, there may be numerous types of situations…and I am just a humble layman. - Jinx
What we’re dealing with here is different. The holes are already there. They weren’t caused by surgery; They are what is being treated by the surgery.
As an example, in older adults, when the vitreous separates from the retina, it can sometimes “stick” too much, and pull open a small hole in the retina (or, in this specific type of problem, in the macula [which is the central part of the retina responsible for high-resolution vision] ). Once the hole is formed, it can result in more of the retina around the hole from separating, and further impairing vision.
So an air bubble is inserted behind the vitreous, and the head kept in a downward-facing position, so that the upward pressure of the bubble hold the macula in place long enough for it to heal.
Of course, we’re dealing with a 14 year old girl in this instance, so the cause is likely different. However, the treatment would probably be the same.
As am I. It’s amazing how much information is out there if you know where to look. I love Google. 