Capsular Tension Ring

[Moxie67]

I had cataract surgery 1 1/2 years ago and the wrong lens was implanted.  A CTR was placed at that time.  I have been told the following:

1) the CTR makes it impossible to exchange the lens.
2)  the CTR makes it impossible to do a YAG capsulotomy to fix PCO.
3)  the CTR could be the cause of the sensation of pulling/heaviness/pain I experience at the temple side of the eye, by irritating the ciliary muscle.

Is this all true?  I'm getting pretty discouraged in my long journey to regain my eyesight.

[Moxie67]

Thanks much for the sympathy.

If I may vent some more...

I think it's a sad statement that I've received more information on the internet than by asking the doctors who have actually examined me.   Not that it's not a good thing to have the internet there, but I prefer to seek medical advice directly from the professionals.   It's not my preferred method of getting healthcare to sit by myself and pore over articles and forums looking for answers, taking wild guesses as to what I might do to help myself, but it seems to be the only option I have.
So I do appreciate this site and all the publications that are now available online because they help fill that huge gap.   And in my opinion that gap doesn't have to be there: doctors should be filling it, and they aren't, at least not the ones I've seen about this to date.
I'm really quite depressed about this latest go 'round and my eye certainly isn't getting any better and meanwhile I'm not getting any younger either and I'm watching the months and years slip by with my quality of life quite diminished.  And I could come to accept having lower quality of life if I was absolutely convinced that there is nothing that can be done, but I don't think that is the case with me.
So I'll just keep barking up more trees and pouring more time and money into it because I plan to live to around 100 and that means other 50 years of this torture which I just can't stomach the thought of.
It is snowing here today which I have to say is just not helpful at all.

[Luvtoski]

I totally agree with you Moxie67, and have experienced the same issues with Doctors "blowing me off" when I asked specific questions.
My guess is that no matter how reputable the institution, the visit is only as good as the individual specialist, and there are arrogant doctors everywhere.

I have found that the more questions I ask, the more threatened the docs seem to feel.  Then, I believe they view my case  as too complicated to waste their time on.  
They are more concerned about their "flow rate/chair time" which are terms that I picked up from Techs, etc.  They have so many patients that they run thru in a day that us more complicated patients don't get the personal treatment we deserve.

I feel bad for you that you spent all this time, effort and money just to have your hopes let down.  Don't let this discourage you, keep doing your research and good luck to you !   P.S.  If you discover anyway to make these specialists take notice and help answer specific questions, please share it with me !

[Moxie67]

Update:   I travelled to the Bascom Palmer.  Was seen by a single doctor who focused exclusively on the negative dsyphotopsia, which he said there was no fix for and that I should try and reduce my anxiety level.  I tried then to address my other symptoms/conditions and was told they were of no concern before I was even finished listing/describing them.  No one looked at the records I had painstakingly collected and brought  with me, and no tests were done other than the eye chart and pressures and a quick look into the eye.  That was the end of my appointment.  I went back to our rental house disappointed and confused and tried to make an appointment to ask the rest of my questions.  Was able to get back in and see another doctors assistant to ask about the corneal dystrophy and she did confirm guttata.  Then I asked to have the CME and ERM checked and OCT was done confirming CME was resolved but no retinal specialist looked at it.   I had a corneal topography but not sure why.   I was taken aside and asked if I was willing to pay for it but it was never explained to me the purpose of the test.  Hopefully it was put to good use.
My remaining questions they said I should email to the first doctor.  When I got home I did so and received a response that told me he does not answer emailed questions and to learn to live with it, without answering any of my very specific questions.
I don't feel I got the assessment I was hoping for but I was given names of two well known specialists who I had already heard of before.  So next I will try to get an appointment with one of them although I have nobody who can refer me I will try and get that done on my own initiative.

I'm not sure how I could have made this trip be more productive and worthwhile.  I sent a complete list of my concerns and conditions and the motivation for being seen when I made the appointment.  Maybe that never went anywhere, or maybe I was scheduled with the wrong doctor, who knows.   Somewhere in the process the line of communication was broken and I'm not sure if it was them or me.  

It's very important that doctors take the time to listen to the patient and respond to their concerns even when the doctor is feeling rushed or impatient.  Otherwise it is a waste of time and resources for all concerned.

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

I would suggest you try a world famous ophthalmology referral center. Example Mayo Clinic, U of Michigan, Washington University in St. Louis,  Wilmer Eye Institute at John Hopkins, Bascom Palmer Eye Institute of U of Miami,  Cleveland Clinic, etc. They will have a "team".  Mayo's is especially good as they are use to dealing with people from all over the World.

JCH MD

[Moxie67]

How do I go about finding such a clinic?  I'm not within driving  distance of the border anyway, so it doesn't have to be in a border state.   How can I tell which ones are reputable clinics, and which ones are multidisciplinary and will assess the whole eye, not just a segment of it?    I'm so leary of spending a lot of money only to be sent away yet again and told that everything is fine, when it clearly is not.   It's not fine at all.  I cannot see.  What's so fine about that?  I just tried once again to get a referral to a comprehensive opthamologist here, and he has refused to even see me.   I'm so discouraged and depressed.  I just don't know where to turn anymore.

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

Many Canadians, dissatisfied for one of many reasons with their healthcare, come across into US northern border states for care. This included one of the provencial chiefs for heart surgery and other high ranking members for cancer therapy.

You should consult with ophthalmology clinics directly that you might drive to.

JCH MD

[Moxie67]

Can anyone give me an idea how much it could cost to have my problems assessed in the US?  
I'm in Canada and my optometrist has suggested that I might consider going to a multi-specialty opthamology clinic in the US to try and get to the bottom of things.   A multi disciplinary clinic is not available here in Canada. I have seen numerous specialists but none of them will help me because they each  think the problem is with a part of my eye that is not within their specialty.   I have had prior lasik on cornea, cataract surgery with wrong power IOL and CTR for loose zonules, posterior capsule hazing, and epiretinal membrane.

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

No the CTR should not be a cause of negative photopsia. CTR have been a great "rescue" device for complicated surgery.

If you have PCO, with your retina surgeon's permission, you should be able to have a yag capsulotomy.

JCH MD

[Moxie67]

Thank you.  The suggested solution from the surgeon was PRK on top of prior lasik.  I then received a second opinion, which ruled out both PRK and lens exchange, and diagnosed PCO.  

I've also seen a retinal specialist who diagnosed mild ERM and CME but ruled it visually insignificant.  And I'm on my fourth optometrist in my quest to try and obtain a suitable contact lens.  It has been a very long frustrating road.

Could the CTR be the cause of my continuing negative photopsia, by preventing the capsule from shinking around the implant?  This has not improved one bit since surgery and it becomes much worse when I tilt my head forward or back, and in bright light when the pupil is small.  It sometimes makes me wish I couldn't see anything at all with that eye, and I do better keeping it closed.

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

1. No
2. No
3. Possibly but not likely

Get a second opinion. Seek out an ophthalmologist that specialists in complicated post cataract surgery care; every community of any size has one. You might even ask your surgeon to refer you to such an expert.

JCH MD