The Romberg's Connection 2009 Survey Results

How the Eye is Affected

Page 28. III. Associated Symptoms (page 2 of 4) cont.: Eye affected (page 1 of 2)
1. Please select how is the eye affected:
Affected Responses
% of Number responding
Blurred vision32
Corneal scarring6
Corneal transplant0
Detached retina2
Dilated pupil16
Double vision14
Drooping eyelids34
(difference in coloration,
usually of the iris)
(type of anterior uveitis)
(inflamed iris)
Keratitis (dry eye)25
Optic nerve damage12
Partial or complete
loss of vision
Receding eye38
(primary inflammation
of the sclera)
Other (Specify) 24
Number responding = 76 / percent responding = 53% of total respondents (143).
Note: This was a multiple choice question.
This chart has a link to additional information.

Page 28. III. Associated Symptoms (page 2 of 4) cont.: Eye affected (page 1 of 2)
2. Please comment if the affected person had any surgeries
that caused problems with their eyes:
Count Comments
1 A cream was applied to the area where it started to burn it down. It was raised and after using the cream, it is now smooth.
1 Cataract brought on the detached retina.
1 Droop was surgically corrected somewhat successfully.
1 I am sorry that I cannot answer this question - I know too little about the words.
1 I had my left eye socket rebuilt which caused my vision to be blurred, but it straightened out.
1 I have had cataract surgeries on both eyes. Only have PR on right side, which I believe started after the cataract surgery. I also had laser surgery to clear up blurriness.
1 I have had four surgeries to correct double vision on my left eye. One surgergy to correct a filtering bleb on the sclering. One surgery on the right eye in order to correct the double vision on the left eye. One surgery to correct the drooping lid on the upper left eye. One surgery to pick up the drooping lid on the lower left eye. I am about to have one final surgery to pick up the drooping lid on the upper left eye. Hopefully this is the end. But I have a cataract that will need surgery.
1 Just had lower lid tightened.
1 My eye surgeon, who performed my second surgery for my squint noticed that my left eye socket and eye ball were smaller (back when I was 26), but my doctor didn't follow up on it at the time. (I had my first surgery when I was 4, but the atrophy had not started at that time.)
1 My right eye was damaged in the first plastic surgery.
7 No surgeries
1 Not at this time but has vision problems.
1 The reconstructive surgery I had caused a lot of scarring around the outside of the eye... my tear duct was compromised, and the optic nerve was damaged.
1 When I got the filling material I could close my eye better. Over the years I got problems with dry eye, and shedding tears (seems contradictional).
1 Yes. Although the right eye always looked different, it never caused me pain until I had my first reconstructive surgery.
Number responding = 21 / percent responding = 15% of total respondents (143).

Page 28. III. Associated Symptoms (page 2 of 4) cont.: Eye affected (page 1 of 2)
3. If the affected person had cataract surgery, please comment on the results:
Count Comments
1 I had a rare cataract and it took the surgeon a longer time to do and he had to use a more powerful machine than would with other patients. I could see a little more out of it until I had the detached retina.
1 I had PRK to help me with my vision. My left eye is lower then my right and so I had problems seeing out of glasses and contacts irritated my eyes. I was never able to see well and when i was pregnant it was worse. I just got PRK done and I am able to see for the first time in my life 20/16 in left eye and 20/18 in right eye.
1 I had small cataracts in both eyes and opted for two lens replacements. The left eye has been wonderful, but as I expected, I had problems with the right. It was done for long sight and and I have had laser surgery since to improve the sight, which it did, then it deteriorated quickly again, so I had a capsulotomy where a tiny slit is lasered in the back of the capsule to let the light through. This has worked well. My right eye is much drier than the left though and I have to lubricate it frequently. I am still getting pain through the right eye. I did not mention my Rombergs to the surgeon as I felt it would serve no purpose.
1 I have not had cataract removed yet in that eye.
8 No cataracts
1 See above
1 Yes, at age 5, no signs of PRS were present then.
Number responding = 14 / percent responding = 10% of total respondents (143).

Page 28. III. Associated Symptoms (page 2 of 4) cont.: Eye affected (page 1 of 2)
4. If the affected person had any loss of vision, please comment:
Count Comments
1 Affected eye is weaker than good eye, but is my dominant eye.
1 Blurred vision, weeping of eye mostly when lying down.
1 Double vision now corrected after surgery. Small pupil (Horners Syndrome). Blurred vision in left eye
1 Has no peripheral vision on her left side.
1 I am almost blind in my right eye.
1 I had trouble getting fitted with the right lens prescription for my glasses the last time my eyes were examined by my Opthomologist. I had to have my eyes examined at least five different times. I would seem to be able to read the chart in the doctor's office, but after picking up my new glasses, had trouble seeing with them.
1 I have monocular vision and only use my left eye for peripheral vision, which is due to my squint. When I'm forced to focus with my left eye (it's my "weak eye") the vision is OK.
1 I have never been able to see well out of the affected eye.
1 I wear glasses so I think it is just normal vision problems. I don't think it has anything to do with the Rombergs.
1 It blurs when reading from her eye movement problem.
1 Last year I went to see a eye doctor because my vision was getting bad. He found out that I had a detached retina and performed surgery to fix it. It has been good since then, but have noticed a slight blur in the past few weeks.
1 Legally blind in affected eye.
1 Legally blind in affected eye. Ocular pressure extremely low (runs between 3 and 5). Eyelid does not close all the way.
1 Legally blind in left eye. Last exam vision was 20/1100.
1 Loss of vision and cataract on left eye (Romberg side), right eye perfect and needs no correction of sight.
1 Loss of vision over four days. Bascom Palmer Eye Institute diagnosed Parry Romberg Syndrome at age 23.
1 Minocular duplicity (double vision in one eye), plus loss of vision.
1 My vision is blurred and I don't have peripheral vision.
2 N/A
1 Not sure
1 Only temporary vision loss. It was corrected.
1 Poorer vision in right eye.
1 Slight loss of vision that is corrected with glasses.
1 Some decreased vision after cosmetic surgery.
1 Temporary loss of vision during stroke. Afflicted with "black blobs". Problem went away on it's own... a mystery to doctors.
1 The loss of vision is greater in the affected eye (left).
1 Vision gradually diminishing.
1 Vision in affected eye is dramatically different than the other, but is fine with eyeglasses. The optic nerve is atrophied, disc shaped. I have had field of vision tests for years and it seems that it has not changed since I was 30, am now 55.
1 Vision only altered if pupil dilated.
1 Wear glasses but can't recall at what age I started wearing them.
1 When left eye is closed, I have almost no vision in the right eye.
Number responding = 32 / percent responding = 22% of total respondents (143).

Page 29. III. Associated Symptoms (page 2 of 4) cont.: Eye affected (page 2 of 2)
1. Please give the results if the affected person had
surgery to correct a receding eye:
Count Comments
1 After I had filling material brought into my eyelids (natural fat and chemical fat) I could close my eye better and it became smaller (more as the other eye). But the positive effect receded after a few years.
1 All ok now. Dr. used bone chips that he got from my scalp to rebuild my eye socket as it had atrophied. This brought my eye up and forward to be more even with the other one. The Drs. also worked on eye lid so that eye isn't so dry anymore. It's not perfect, but it is much better than it was.
1 Botox injections
1 Fair
1 Fair- has a gold weight on eyelid- though needs a heavier weight placed.
1 First two fat transfer reabsorbed
different surgeon - two fat injections some improvement
I think if i had not had the first two, it would have had a better result.
1 Getting surgery soon to correct the eye.
1 I had skin grafts -- the tissue was taken from my left hip and placed behind my left eye.
1 I have not had this surgery. I understand it is very serious surgery because it effects eye vision and I would not be a suitable candidate.
1 I was told before the PRK that I was going to need total reconstruction of my eye orbit, temple and upper check to raise the left side orbit to be even with the right and bring my left eye forward. I declined this operation and saw four other doctors. One said the same thing as the first and the other three told me I did not need that and that I qualified for PRK surgery.
1 No - just fat injected under eye which gives the appearance of it not being so droopy. Still weeps alot.
9 No surgeries
Number responding = 20 / percent responding = 14% of total respondents (143).

Page 29. III. Associated Symptoms (page 2 of 4) cont.: Eye affected (page 2 of 2)
2. Please describe any factors that caused dilation of the eye:
Count Comments
1 After every operation I had, my left eye will dilate and it will stay that way for a long time, then it will go down with some dilation left, but it never would go back to normal.
1 My daughter has a coloboma which is a uneven shaped pupil which does not get smaller in light
1 Nerve damage, right eye does not respond to light.
7 None
1 Not sure
1 Stabismis surgery caused the pupil to dilate fully and stay that way.
1 Unknown
Number responding = 13 / percent responding = 9% of total respondents (143).

Page 29. III. Associated Symptoms (page 2 of 4) cont.: Eye affected (page 2 of 2)
3. How long did the dilation last?
Count Comments
1 2-4 weeks at a time
1 Continuing / unreturnably / irreversible
1 Dialation is continuous.
1 Dialation is still in effect.
1 For a long period of time, 2 or 3 months.
1 It has been ten years.
4 n/a
1 Permanent dilation of the left pupil
Number responding = 11 / percent responding = 8% of total respondents (143).

Page 29. III. Associated Symptoms (page 2 of 4) cont.: Eye affected (page 2 of 2)
4. What measures did the affected person take to correct problems with dry eyes:
Count Comments
1 Best result with an eye spray to the eyelid.
Avoid bright sunlight, keep blinds closed and wear sunglasses outside.
Stay hydrated - drink plenty of water.
Stay out of wind.
1 Dr. gave me samples, which I have not used.
7 Eye drops
1 Eye drops- see above for rebuilt eye socket and eyelid revision surgery.
1 Eye drops such as poly gel and Luxyal
1 Eye ointment every night
1 Had tear duct sealed which has not helped at all... use drops all the time.
1 I consciously blink more. I haven't discussed it with my doctor as yet, so don't have any drops at this stage.
1 I continually use drops for dry eyes.
2 I lubricate the eye with ointment and tear drops.
1 I put ointment in every night before sleep, and lubricating drops in a few times throughout the day.
1 I take supplements (GLAs, borage oil) which seem to help a lot, all the pain is gone, and I also put tear drops in my eye. At night I tape that eyelid shut.
1 I use an ointment called Lacrilube at night to keep my eye moist. If dryness or irritation occurs during the day, I use Refresh tear drops.
1 Lubricating eye drops and eye gel. I also wear a bandage contact lens on that eye.
4 N/A
1 Nightly use of PM refresh ointment.
1 Not sure
1 Over the counter eye drops at night before bed and in the morning.
1 Tear replacement during the day and stronger Rx at night.
1 The eye on the Rombergs side does not tear at all. I've been using Restasis which makes my eye glassy when I cry but it still doesn't tear.
1 They opened the tube next to my nose a bit, but it did not work. Other than that nothing was done.
Number responding = 31 / percent responding = 22% of total respondents (143).

Page 29. III. Associated Symptoms (page 2 of 4) cont.: Eye affected (page 2 of 2)
5. Comments concerning how the eye is affected:
My eye gets infected often.... it hurts all the time.... the surgery caused my eyelashes to grow inside the eye area which irritates it.
Tight, does not rotate properly, double vision due to recessed eye.
Some drying of the eye at times due to the eyelid not completely closing during sleep.
There is almost continuous strain in the left eye now, causing pain and redness. I have to stop reading after a couple pages to rest the eye before starting to read again. Have not found out why this is yet.
Lower vision in rombergs eye (right), also extremely sensitive to light as only have partial eye lashes.
Weeping eye
Blurred vision
The left eye protrudes, causing dryness. The right eye overcompensates for the dry left eye and waters all day long.
Did try steroid drops at one point, but not for long.
This eye was severely near-sighted (-8.5). This was corrected with lasik surgery about 10 years ago.
Droopy eyelid
Just asymetrical with the other eye, vision, etc. perfect. Hyperpigmentation around the left eye.
Eye does not close completely due to the lower lid being pulled down.
I think the dry eye and episcleritis are due to the eye receding slightly and the eyelid not being able to close completely when sleeping.
Mitchell's eyelid dosen't close properly when he sleeps.
Avoid wind and getting salt water in eye - use drops.
Without having had the surgeries to correct the problems I had, I wouldn't be very happy- they were really bugging me, and I'm sure that my eye would be all good and scratched up by now!
Dry and gritty. Vision gets worse as it gets drier.
Not sure, but she has vision problems.
It is very annoying. I have to wear make-up because of my red skin, but when I am outside and get wind in my face, all the tearing washes away the make-up. In heated or cooled rooms I always get the opposite: dry eye. Sometimes I cannot do anything else but close my eyes.
I don't know if its associated with the Rombergs or not................But i get these flare ups of itchy eyes, well the skin around my eyes..................they swell and can burn.
Right eye seems much smaller than left
Number responding = 23 / percent responding = 16% of total respondents (143).

Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for a consultation with one's personal physician. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.
As a support group, The Romberg's Connection is unable to offer medical advice to anyone.

Throughout this survey, when we use the term "Rombergs" or "Romberg" we are referring to: "Parry Romberg", "Parry Rombergs", "Parry Romberg Syndrome" and "PRS".

This is an unscientific survey designed to gather information from those who must deal with Rombergs on a daily basis.