Retinal Tears

[OmGirl]

I am 37 years old and was diagnosed with Lattice Degeneration of the Retina about 16 years ago, and was told that most likely, it would never be an issue.  In the last 4 months, the condition has rapidly progressed, leaving a multitude of holes in the retinas of both eyes, as well has many tears in both.  In those 4 months, I have had 4 laser procedures in the right eye, and 3 in the left to repair tears, and another to anchor down a small area that was beginning to detach in the right eye.  Although my visual acuity is not considered legally blind ( I wear glasses--not sure of the Rx--and my Myopia is quickly becoming worse), I have no peripheral vision left, and so many shadows and blind spots in my visual field, that I cannot even drive safely anymore, and constantly run into furniture, walls, etc.  I have constant flashing lights in both eyes.  My retina doc says that it's like a volcanoe giving signals before it erupts.  He believes that full detachment is eminent.  From what I can find through research, Legal Blindness only addresses visual acuity.  What about folks like me who can "see", but really can't see because of all the shadows and lack of peripheral vision?  How do we get assistance and support to continue working and traveling, etc.?

[matt_ret_d_vitrectomy]

I had the "buckle" in one eye. (with vitrectomy+laser+bubble, after cryo + bubble in the same eye didn't hold the RD).

So far so good post buckle.  My retinal specialist at Mass Eye + Ear Infirmary recommended it in my case, so I trusted his judgement.
I developed a cataract (after pars plana vitrectomy, naturally!), so the myopic shift didn't matter, except that that eye was quite different in magnification (aniseikonia / anisometropia - see other postings on that), so now I wear a contact lens in the opposite eye - and that's working just fine.  Beats being blind!

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[mimi1130]

I'm a writer, working on an assignment for an ophthalmology magazine about online medical forums.  Would you be willing to talk with me about your experience online?

Thank you.

[berrywoo]

It may seem like there are plenty of cons, but the important thing is is to have your retina stay attached and the scleral buckle along with other procedures could be a big success! Trust me I've been through the works w/ both eyes and having an initial surgery be more agressive, which could mean using a buckle plus adding a pars plana vitrectomy and some sort of tamponading agent gives you a better chance for a successful re-attachment if you are at high risk (if you've already got some signs of PVR this may be the only way to go!). Best of luck.  

[berrywoo]

Scleral buckling is a procedure that involves suturing a band of silicone around the eye. You can watch this procedure being done on youtube if you wish (I must warn you that if you're squeamish DO NOT watch it as it can be somewhat graphic). You are awake during the procedure but will be given sedatives as needed, or you could opt for general anesthesia.
Pros: it will help the retina stay attached by helping to reduce traction, used w/ other procedures the success rate for RD repair is pretty high
Cons: causes a myopic shift, so if you're already nearsighted you'd be more so, plus there is the usual risks associated w/ surgery like infection, it may take some time for you to get used to buckle as some patients have complained of a foreign body sensation, some people also experience pain afterwards
General info: the scleral buckle is usually left in place permanently, the risks of complications like infection are small. The buckle by itself does not prevent tears from re-opening it is usually combined w/cryopexy or laser photocoagulation, or other procedures. It is not usually done as a preventative measure.
If you want more info. search the forums I've posted an RD101 and other posts related to RD's. Also, search google.
In my opinion the buckling is the worst of all the procedures for RD, mostly b/c of the myopic shift. However, it can be helpful in many cases.  

[OmGirl]

Thank you for your comments!  It is comforting to find a group of folks to talk to who have been through similar obstacles.  Quite frankly, I am petrified of "the Buckle"!  I just can't find anything that says the pros outweigh the cons.  Anyone out there had this?  Can you give me the skinny?  Thanks!

[Ray T Oyakawa, MD]

There have been some studies that indicate a prophylactic scleral buckle in the fellow eye of a high risk patient is worthwhile.

In my personal experience, I have not seen this.

Low vision centers, such as the Braille Institute is a resource.

Dr. O.

[matt_ret_d_vitrectomy]

That's a great question and answer.

Good luck OmGirl!

Also, just curious - with all that going on, would a scleral buckle be indicated prophylactically to minimize or reduce further tears and holes?

Dr. O (and other MD's) - can you suggest any other resources for help with compensating with the other vision problems?

Since my RD's and various surgeries, I've found the best thing for my office work anyway is to get a larger, brighter computer monitor (22" LCD screen is what I got). This ended a lot of squinting and hunching over to see the words and letters.
I've got some peripheral loss on the left, so I have to be extra careful driving, but even walking I find myself bumping into things or being suprised by people approaching on the left.
Any other sources of tip or resources for patients with these kinds of issues would be greatly appreciated!!!!
I recognize that retinal specialist and ophthamalogists may not be experts in this area, but I hope you have knowledge or connections to those that are.

[Ray T Oyakawa, MD]

Legal blindness addresses visual acuity and field of vision.


Dr. O.

[berrywoo]

Legal blindness covers both visual field and visual acuity. The legal definition of blindness is 20/200 in the better eye with correction and/or a visual field of 20 degrees or less.
If you are having problems getting around safetly it is time to get help!! Contact your local Services for the Blind, or local Lion's Club as they can provide you with the information you need. You can apply to take orientation and mobility (white cane) training or apply for a guide dog (this takes more time).

I am in a somewhat similar situation to yours as far as the lack of peripheral vision goes and I have opted to take O&M training because I eventually got frustrated with running into things and not being able to simply walk around independently.