Unchanged symptoms 6 months after BL cataract surgery

[kaitlin1952]

Hello from Rome, Italy. Bad news unfortunately for a radiologist. Unchanged symptoms after bilateral cataract surgery (June and July 2016) for hyper mature cataract and PEX (left eye) and mature cataract (right eye): bilateral symmetric negative dysphotopsia (no signs of change), glare, photophobia, night flashes. Actually worsened recently by dry eyes and episodes of superficial infection (left eye) and blurring of vision in the PEX left eye.
Don't really know what to do.. here in Europe there's not much interest in negative (or positive) dysphotopsia, usually not even mentioned in the post cataract surgery complication list. Sam Masket has devised new lenses for N.P. and  Dr Péter Vamosi from Hungary is part of his new IOL trial team.
I remember that after 6 months of unchanged symptomatology a lens exchange operation is indicated.  Unfortunately, despite my efforts, neuroadaptation has not set in at all, so I would really appreciate your opinion on  the best next steps. My best regards
Catherine

[CBCT]

I had positive dysphotopsia after bilateral cataract surgery with Crystalens.  I was very sensitive to light.  One positive step was to get get prescription glasses with non-polarized overlays that attached to my frame with magnets.  This allowed me to use computers at work.  I  had unsuccessful YAGs and ultimately had both lenses exchanged for monofocals.  The positive dysphotopsia was resolved.  Best wishes to you.  CBCT

[John C Hagan III, MD, FACS, FAAO]

Thanks for the feedback and happy ending.

[kaitlin1952]

My pleasure and gratitude Dr Hagan,
Catherine

[kaitlin1952]

.. sorry my phone got stuck and the post ended a bit too sharply.
Of course I wanted to thank you before and also add that the lenses are photochromatic and polarized. Was wondering if myosis responds to pharmacologically as at the operation they couldn’t dilate the pupil and used expanders/hooks which ended up in fraying the iris and postop pain.
Have a good afternoon Dr Hagan and always terribly pleased to hear from you, it’s bedtime here, wish I could come to K.C. but still have to work at the hospital till November this year when I will retire.. maybe I could come to see you then!
Catherine

[John C Hagan III, MD, FACS, FAAO]

Catherine you need physicians/surgeons that you can get back/forth regularly.  There has to be someone in Italy/Europe that can help you.   Have you tried looking through a pinhole? If that helps they do make clip in pinhole lens that can be worn over regular lens.   the iris does not respond well to light or drugs the more mechanical damage was done at time of surgery.  Moreover pilocarpine drops that work to make pupil smaller carry risk of retinal detachment.

[kaitlin1952]

Hello Dr Hagan
Changes after 12 months: (BL cataract operation June 2017) (Italy).
The left PEX eye totally unchanged (negative photodystopsia, dark lateral arc unchanged, photophobia in morning sunlight + neon, weeping, flashes etc and viscous eye drops help for a while) but ....
Right eye: the dark lateral sharp arc shadow has disappeared and all in all the negative photodystopsia has resolved!!
So 50% positive outcome (R eye).
So, suppose I’m getting used to L eye discomfort and that’s it.
In the meantime I’ll be retiring soon so all that 12 hr reading strain as a radiologist will end (good news).
Found out that the best cure for negative photodystopsia is getting your glasses back on (in my case reading glasses) after a cataract operation plus tons of patience plus a lot of help and support from an across the Atlantic wonderful doctor i.e. Dr Hagan.
Sincerely miss your exceptional support Dr Hagan, I am much better (still have a silly habit of wearing glasses even when I don’t need them because that eliminates the NPD of the left eye but then I wonder why I’m feeling tired..) and I’ll never forget your vital patience in pushing me to overcome those first 6 months of feeling disabled  after the double eye operation. Have a nice summer,
and a million thanks,
Catherine

[kaitlin1952]

oops sorry correction: the double operation for cataract was in summer 2016
thanks again, Catherine

[John C Hagan III, MD, FACS, FAAO]

Catherine.   Thanks for the follow up. When dealing with NPD  50% cure is good.  Have seen 2 patients in clinic last 6 months. One has had both eyes for over year, other one eye for 6 months.  One of the world's experts Sam Masket MD of California has even designed his own intraocular lens (IOL) to prevent any type of  temporal darkness/lightness.  Best of luck in retirement.

[kaitlin1952]

Thanks for your reply Dr Hagan. In fact, late night mistake..the operation was in fact in 2017, so it is a 12 month followup.
Just the feeling that the PEX in L eye is incurable (I also have familial hypercholesterolemia, wonder if that is relevant).
Still, using glasses does take your attention away from it and so neuroadaptation sets in on its own, I feel.
Yes, I've followed Dr Masket's every move and found out that Dr Péter Vamosi, University of Debrecen, in Budapest is Masket's number two for that operation in Europe, but in fact by the time I found him I was much better. Good to know, though.
Here we're into a pretty hot summer after a coldish rainy June. But I've been very busy as my daughter graduated in Medicine at the Catholic University of Louvain Belgium  late June and will be starting her 3 year specialisation course in Internal Medicine + 3 year  Gastroenterology at her University next October and there's a lot of organization business involved but we're all very happy (that helps everything!).
All the best from faraway, have a nice summer and can't stop thanking you,
Catherine

[John C Hagan III, MD, FACS, FAAO]

Thanks for the follow up. Many congratulations on your daughter going into medicine. I have two daughters and I did so hope at least one would go into medicine and find it as satisfying as I have.  Neither did.  I have however mentored my cousin's daughter into medicine (emergency medicine).  

[kaitlin1952]

Thank you for your congratulations. It's a bit of a heavy business following daughters studying medicine abroad but now she has also three languages: English, Italian and French (her studies are in French) and in any case she preferred her distant university to Rome, Italy. Well, you mentored your cousin's daughter into emergency medicine which is quite something (an important responsible job). In my case, I went against my parents' wishes since I had decided I wanted to be a doctor when I was 16; in the end I managed on my own and did what I had chosen and that's why I supported my daughter in every way because what I think really makes a difference in life is doing exactly what you want to do.
If in Europe (Italy for example!!) let me know, Catherine

[John C Hagan III, MD, FACS, FAAO]

One of the things I do is Editor of Missouri Medicine  a peer-reviewed medical journal in publication since 1904 and owned by the Missouri State Medical Association.  It is in the top 3 state medical journals in the USA.   Follow this link to the Jan/Feb 17 issue. See the first 3 articles about our children going into medicine.  Second article is by me, third by my cousin's daughter who is ER physicians. I think you will find them enjoyable.    http://www.omagdigital.com/publication/?i=383218#{%22issue_id%22:383218,%22page%22:0}

[John C Hagan III, MD, FACS, FAAO]

http://www.omagdigital.com/publication/?i=383218#{%22issue_id%22:383218,%22page%22:0}

[kaitlin1952]

Thank you for the link, I read in fact most of the articles and found them all very interesting and clear. The one on lumbar Xrays is totally true and a whole lot of patients fall into the pit of unnecessary intervention.
As for children choosing medicine I found that your article was much more in my line of thought compared to the first, although must admit that there was a lot of truth in the financial aspects of undertaking the career.
Italy’s health system is cracking down due to the copying of the big mistakes made by the UK/NHS in the use of outsourcing strategies (very expensive,  ineffectual but most of all prone to money eaters).
The costly “not so universal” Italian health system, unfortunately burdened by corruption and favoritism has produced  unemployed trained doctors, haughty well paid nursing staff (top notch jobs but no real responsabitiy) and of course poorly paid dissatisfied  hospital doctors (their contract was last renewed 10 years ago). So when my daughter came out with the “I want to be a doctor “ phrase at the end of her school years her doctor parents had a fit. My solution, which she accepted, was “OK but in another country where you’re judged by what you’re worth” and after my night time research on university ratings and expenses I discovered the UCL Louvain near Brussels and thought  that as I was doing shift work I would be free to monitor her closely by travelling there and checking progress or disappointment and that’s how it went (totally against all Italian parameters of what’s best for young girls). Not only, very surprisingly their fees have remained extraordinarily low (half the Italian fees, now around 2000$ per year) despite the thorough training programs (5 years exams + 1 year of hospital internship around the country in varying specialities). She was also immediately offered a little student flat on the hospital grounds which she declined because she has definite ideas regarding differentiating home from work. Thinking back it was risky but just a few months ago she looked at me and for the first time said “Thank you Mummy” (her father was definitely skeptical at first). So my opinion is that you have to “feel” medicine and if you do you’ll manage it and be rewarded, despite the heavy responsability and hard work.
Glad to read Shelley’s article, balanced and sincere showing passion for her job, her family and other interests. Well done Shelley! In Francesca’s case she loved her ER electives but in the end opted for Gastroenterology (3 yrs Internal Medicine called “common trunk” followed by 3 years Gastroenterology) and she’ll be paid which is good for her morale (and Mummy’s!).
Nearly midnight here, take care and so pleased to be back in touch with you,
Catherine

[John C Hagan III, MD, FACS, FAAO]

Glad you enjoyed the articles. I've been Editor of Missouri Medicine since 2000.  We are exceptionally fortunate that in the Missouri/Kansas area we have 9 medical schools and thus can rotate the topics among various departments at different schools.   If you are ever so inclined we are open access and this is a link to back issues.  I do hope Francesca finds medicine rewarding and fulfilling.    LINK BACK ISSUES MISSOURI MEDICINE:  http://www.msma.org/missouri-medicine-library.html

[kaitlin1952]

Thanks for the link, now got it my PC and sent it to Francesca who’s a good reader of medical qualified updates and aricles and Internal Medicine is actually her favorite area.
My best wishes to you both and to Shelley for a well deserved holiday but if you ever choose Italy please tell me (***@****), best season is definitely autumn because summer is too hot. Have you been to Venice and Florence/Siena? Well worth the crossing.
I’ve been to the US  visiting Philadelphia (holiday) and Chicago (work) where the gigantic Conference of the North American Association of Radiology is held every year . In one of my flights Atlantic City was a stopover so all I got was a sky view.
My best wishes and admiration,
Catherine

[John C Hagan III, MD, FACS, FAAO]

Certainly will.     We have visited Italy.  Florence, Sienna, Amalfi Coast-Capri, Rome, Pompeii and a few in-betweens. Everyone told us how wonderful the food would be. We didn't think it could live up to expectations but it far exceeded.  In Siena we stopped in a small restaurant.  After some time I asked the waiter to bring a menu. He said "The menu is whatever momma feels like cooking today. I'll go ask her."  

[kaitlin1952]

Definitely worse in bright light that’s why I wear photochromatic lenses when I’m reading MR/CT exams on the big bright special screens and also when it’s sunny outside. The pupil has lost much of its contraction/dilatation function and that I checked myself with a bright torch.
I’ll definitely write to Dr Rupert in Vienna because it’s just too difficult and hazy here. Will let you know as soon as he answers me.

[kaitlin1952]

Thanks! That’s what I’m doing because there are no signs of improvement from day 1.
Dr Masket has devised new lens with no sharp edges but he’s across the Atlantic. You had told me about your wife who was operated shortly after I wrote to you last year. In Italy there’s no hope but I found an ophtalmologist in Florence who at least knows about the PEX/cataract situation and I’m trying to contact him to get a consultation (he’s AICCER).
Hope for the best, will let you know and thank you for your great help which I really appreciate,
Catherine

[kaitlin1952]

Forgot to add the new thing. Had a feeling of something moving and sliding back in the PEX eye last week when I was washing my face - have to check if there’s movement of the IOL with the colleague in Florence, Catherine

[John C Hagan III, MD, FACS, FAAO]

Best of luck. Let me know if I can be of further help.  Quite some time ago I wrote a paper with Rupert http://www.prof-menapace.at/en/curriculumvitae.html MD   He has done well in his career, he very intelligent and knowledgeable when we collaborated.  He or his institution would be worth checking out.  

[John C Hagan III, MD, FACS, FAAO]

Sorry Rupert Menapace, MD

[kaitlin1952]

thanks again so much. I'll check out Dr Rupert.
The Florence ophthalmologist was not at all interested in what I was telling him on the phone (they just don't like the idea of cataract complications maybe they think litigation issues which is certainly not my case. He insisted on saying I couldn't have negative dysphotopsia in the left PEX eye since it is myopic..well I'm not an expert here but I don't seem to grasp this last remark. Is it true? In my case the pupillary diameter is about 30% smaller in the PEX eye compared to the other eye and I know for sure that's what it is since it was the first eye to be operated on and it took me ages to try and understand what that strange sharp temporal bracket of shadow in my field of vision, plus he said you can't have it in bright light (it's in fact the opposite the bracket dims in darker light not brighter light). Sorry to bother you but you're my only light in the darkness and that is totally uniquely true.
With great appreciation, yours very faithfully,
Catherine

[John C Hagan III, MD, FACS, FAAO]

That is not correct what you were told.  Both negative (dark) and positive (bright) dysphotopsia can occur with any post operative refractive error (myopia, hyperopia, astigmatisn, emmetrophia).   I gather from many of the postings here that in Europe and other parts of the world it's still "the doctor knows best and its not your right to question"  That has pretty much gone away in the USA.  

You might see if there is much difference to your symptoms in bright light or dark environment.  If worse in dark light it means a larger pupil makes your symptoms worse. For that you might try Alphagan-P  as it keeps the pupil from dilating as wide in the dark.  If your symptoms are worse in bright light that would indicate a small pupil makes it worse and you might try dilute phenylephrine <2.5%  If the symptoms don't vary depending on ambient light an pupil size I don't know how to help you.  I think you've tried custom glasses/tints/photochromic/anti-reflective glasses.

[kaitlin1952]

Dr Hagan the story goes back to last summer when you gave me tons of valuable advice and got me out of postoperative depression (Italy).
At my hospital we are under 6m surveillance for eye cofik as radiologist.For years the verdict was “slight opacification of the lens” but after several years a new ophtalmologist diagnosed PEX + mature cataract and cataract other eye.So I had the double operation with complications in both eyes, please help me again (drops help but don’t resolve - I’m still working). thanks Catherine

[John C Hagan III, MD, FACS, FAAO]

I would suggest several things.  Do a number of literature searches, review back issues of the Journal of Cataract & Refractive Surgery (a joint publication of US and European societies) to find the leading experts of this problem that you have access to and would be able to travel to and back regularly.  You might try to call, write, email Sam Masket MD in California as he is a world expert and I'm sure knows the person best for your set of problems.  Cataract surgery is so uniformly successful (my wife had fantastic result this year both eyes) that when major complications occur most don't have much experience.  Most all major referral centers and major cities have several ophthalmologists that specialize in post operative complications. Matching a complication treating ophthalmologist with your set of problems is absolutely essential.  Very important as I said to get the dry eye under control: finding the right lubricant, trying omega 3 by mouth (the newest 'buzz' in ophthalmology is esterified omega 3 or kreel oil), environment modification, and perhaps Restasis or the newely released xiidra (which in US is extremely expensive).

[John C Hagan III, MD, FACS, FAAO]

I have to ask why would you let your cataracts get to hyper-mature before having surgery? That increases the risk of complication. Dr. Sam Masket is one of the world's experts on dysphotopsia but in a recent review in the Journal of Cataract & Refractive Surgery neither the cause nor the treatment is known for sure.   http://www.jcrsjournal.org/article/S0886-3350(17)30051-2/fulltext      A treatment is described in which the nasal optic is truncated and this worked in their reports:  http://www.jcrsjournal.org/article/S0886-3350(16)30454-0/pdf     I don't know anything about the IOL dr. Masket designed other than the article in JCRS.     Get your dry eyes under control. If you use artificial tears more than 4X day look into Restasis> my wife and I both have bad dry eyes (technically ocular surface disorder) and we have been on restasis for 5+ years with great results.  Don't foret you PXE eye has a 20% chance of getting glaucoma AND the risk of the IOL dislocating with any eye surgery especially IOL exchange carries a high risk of the IOL subluxating into the vitreous and not being able to be used for IOL exchange.