Extreme light/glare sensitivity - Photophobia - after catract surgery

[HurtingBlueEyes]

This is my 2nd time posting on this site.  Briefly, I had cataract surgery 1/9/008...I've had extreme light sensitivity, migraine headaches (which I never had before surgery), glare, etc,   I have been to 3 Opthamologists, and 2 Neurologists, with no results.  Before I had the dual cataract surgery, I told the Opthamologist (surgeon)  that I could never wear contact lens because of the glare and eye sensitivity problem all my life.  He said I would not have that issue with cataract surgery.......well, that wasn't true.   After surgery when I told him about the serious problems that I was having, he told me to go to meditation and yoga classes and he became very arrogant with me.   I went to another Opthamologist in Memphis, TN who by reputation, is supposed to be the best there is here.  He told me to go to a Neurologist.....I have gone to 2 of them....no positive results.  They have had me try 5 medications and all have had bad side effects.

I read on this site that Omega3 and flaxseed oil might be helpful........I've been on it a week now, but I understand it takes several weeks to see if it will help . I also take Verapimil 240 mg. to ward off potential migraine headaches , but that isn't always successful.   I still have to wear sunglasses everywhere and also to watch TV.  I have all the lighting in my house very low and cannot stand overhead lighting of any kind.  To sum it up:  If I stay in the dark, I have no problems, but who can live their life in a "bat cave." ?....pardon the pun !!!!

This problem has affected my working ability, my income and my physical life..........I am a desperate person  trying to find the answers and no doctor so far seems to have any solution.  All they want to do is to get you to try another medication with strong side effects and get you out of their office as fast as they can.

Does anyone out there have any further suggestions or success stories????  

[John C Hagan III, MD, FACS]

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[HurtingBlueEyes]

Dr. Hagen, how can I locate a physician in the Memphis, TN area that has experience treating severe Photophobia, glare and headaches after cataract surgery?  I'm not asking for a referral because I read where that's not allowed.   I am asking what avenues do I have in researching a physician in Memphis that treats this type of condition.  I have already done a search on the internet with no results so far.

Are there any cataract lenses that are darker  and can block out the glare problem that artificial lenses create.  Also can the existing lenses be removed and new lenses be applied?

Thank you and I'm truly grateful for a reply.

[Michael J Kutryb, MD]

Regarding the photophobia - first you need to make sure the surgery looks A-OK.  I'm assuming that is the case.  Then you can perhaps take oral thera-tears nutritional formual capsules 3 or 4 times a day and I would probably try punctum plugs, preservative free artificial tears every hour or two.  I would consider a trial of low dose steroid drops like Lotemax a couple of times a day and also consider a trial of a non-steroidal drop like Acular LS or Xibrom twice a day.  It is important to realize that the implants do let quite a bit of light in and that is normal.  Obviously you are way more sensitive than most people so you just need to try different treatments until you start to find something that helps.  Hopefully you will also develop some adaptation over time.  Personally, I don't believe oral medication would help much in this situation - but I suppost it wouldn't hurt to try something like Zoloft or Paxil - I just don't think that is the right direction to go.  Restasis drops may be something that might be of benefit at some point - but effect would take some time.  Something like Acular LS or Xibrom might help quite a bit as long as any dry eye situation was treated aggresively as well.  Please understand that you are not alone.  I do see situations like this now and then.

MJK MD

[tenntom]

Well, the bottom line is that when one has extreme photophobia most of the opthamologist don't know what to do with it.  It appears that very little research is going on but some.  My wife had cataract surgery using the Acrysof IQ IOL SN60WF in March and April.  The results were catastrophic to her and we've been to different docs and most just scratch their heads and offer some things to "try".  Rather than make an attempt to find someone that has experience with the problem and refer they just leave her hanging in the breeze.  The cataract surgery has been verified as "perfect" by 3 of them so that's not a problem.  She wears sunglasses coated sith FL-41 tint in harsh light and that helps some but not enough.  She's had all the eye tests 3 or 4 times each and everything appears to be normal.  No MRI has been done yet.  Sjogren's Syndrome is a possibility (we've spoken to several stricken with this) but it doesn't appear to be that in her case.  There are blood tests, Schirmer strip tests (for dry eye) and lip biopsy.  It's also interesting that even though she has many of the symptoms of Sjogren's, only one Doc was willing to do the Schirmer test to rule it out if nothing else.  The blood tests were negative but we understand that there is Sero-negative Sjogren's which means it isn't a sure test for the syndrome.  I could write a book on the doctors, tests , and research we done which about 90% has proven worthless.  The John A. Moran Eye Center in Utah has done some work on photophobia so we may be in for a trip out there in the not too distant future.

Now, with all that said, she saw an opthamologist yesterday  that started from the ground up but he made an interesting comment during the visit.  There is a possibility that she does not tolerate the particular IOL that was used in her surgeries.  Even though it's supposed to be state of the art, there is a 1-3% chance that they won't work for a particular person.   He said that the materials used, the way the IOL is made, etc. can have a lot to do with success in an individual.  He said that he does so many cataract surgeries a year that he has seen a small group of patients that had to have the IOLs used initially replaced with a different brand/type.  Now, that's the first we have heard of that but my wife postponed a YAG procedure for one of her eyes because of the possibility that the IOLs may have to be replaced.  As I said before, from what I have read and the dealings we've had with different Docs in the Nashville area, most don't know how to deal with the problem unless it is an obvious fix like dry eye/scratched cornea, or something else.  We have found that the wife is in an extremely low percentage of people that have EXTREME Photophobia.  Yeah, she stays in during the day and our house is kind of like a "bat cave", we've had new window treatments, tinting on the skylights, etc. done so she can get some enjoyment out of the day.  She doesn't drive anymore and all the eye surgeon can say is that he is puzzled.  She's seen retina specialist, had the angiogram, and thousands of dollars of other tests but still, the first hope we got was yesterday with the info about the possible need for IOL replacement.  By the way, I mentioned the John A. Moran institute to her surgeon and he said it was coincidental that he knew a colleague from Kentucky that was part of that group.  He said he could refer us to them if wanted.  If you don't get any resolution, you may have to search and search on your own because it doesn't seem like doctors/surgeons nowadays want to admit that they can't help you and try to find someone that can.

Can you tell I'm frustrated by this?????  Just think about my wife and yourself.  The postings put on this site are very helpful because some ideas pop up that we've never thought about but we're still searching for a fix!!

[kg17]

Dr. Kathryn Digre is the neuro-ophthalmologist who has done extensive research and clinical work with photophobia at The Moran Center.  I consulted with her on my own case.  It might be worth a trip.