post surgery blindness

I recently lost the sight in my right eye and am facing an uncertain future retaining sight in my left. I have no answer as to what happened to me in the past year or a clear path to take to prevent future loss of sight.

I had cataract surgery one and a half years ago and subsequently developed a retinal detachment. I had a vitrectomy to repair the detachment and awoke with near complete loss of vision that did not change during the normal healing time. After a subsequent exam by a glaucoma specialist, I was informed that my right optic nerve was 95% gone and not to expect any return of vision more than the shadows that I now see.

This is the opinion of one of two of the only glaucoma spec. in our state. My retinal surgeon feels their is room for recovery. Is it worth it for a second opinion and is there a recomendation for a glaucoma clinic in New England.

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

Zelmo
     You have my sympathy for the problems you have. Every ophthalmologist has to take care of the most difficult 1-2% of eye problems.
      It is entirely possible that you did not have glaucoma prior to your cataract surgery and that the glaucoma developed as a complication of the retinal detachment or the ensuing surgery.
      The important thing is what do you do now. Great glaucoma centers in New England include the Mass Eye and Ear Infihttp://www.neec.com/
      It may also be useful to see the other glaucoma specialist in your state.
      You need to know 1. What can be done to keep my good eye healthy all my life and prevent the problems with the bad eye. 2. What can be done to help the bad eye and what is the prognosis  3. Can you tell if my bad eye had glaucoma before the cataract surgery.
      JCH III MD

[AnnaE]

I permanently lost the sight in one eye this years. You need all the opinions that you need. That second opinion will hopefully be enough, but if it is not, and you have unanswered questions, get a third.

The doctors will answer you soon, but you could try Tufts  in Boston and Harvard medical school. Of couse, one of the best is Wills eye Instite in Philadelphia, and then there is Wilmer at Johns Hopkins in Baltimore.

I saw six doctors about my eye, over a period of 8 months, and I talked with doctors all over the country, and one in Europe. I am on my second doctor now.  I switched afeter 8 months, becasue #1 and I could not communicate with each other. He would not give me clear answers. He acted as if he were much more important than the issue of my eye, which means the universe to me. That really hurt--he would not listen to me, and he missed a very important stage of my treatment. I am not sure that any harm was done, but it felt like heel for my doctor to tell me that it was not important that my pressure had risen, when I was afraid of losing my eye to hypotony. He would not even examine my eyes. I was put on a new treatment that could have hurt my progress.

One of the doctors I consulted with told me that I had a good doctor, don't worry about communication. He was wrong. Yes, you need expertise first, but you and the doctor also need to make sense to each other. That consulting doctor also told me that I would lose my eye, and I haven't. He also told me glass eyes did not move. Well they are not glass anymore and yes, they move. Some ocular plastics dortors and technicians are artists.

You need more information than "there is room for recovery." Ask your doctor for details, and get another opinion, if you feel you need it. Best of luck to you. I hope that you can recover your sight.

[zelmo]

Thank you for sharing your story. I too feel that many Dr's. are unwilling to committ all of their findings to the patient early in treatment and discuss all the options other than the standard list of %'s of events that could occur after each treatment. I had NO idea that my right eye had advanced to such a compromised state due to glaucoma or I never would have chosen to have cataract surgery which started the series of events leading to the loss of vision.
My retinal surgeon has been exceedingly forthright though and easy to question and was the first to tell that my optic nerve damage was advanced after my retinal surgery when recovery did not occur. It was he who referred my to a glaucoma spec.
I had been having pressure test and field vision test for the last ten years and was never advised to start treatment by another  opthamologist for glaucoma until AFTER my cataract surgery 1 1/2 years ago. I never knew.....but I take responsiblity for not being more aggressive on my own behalf.
I, like you, feel like I've been unable to communicate with some of doctors I've had and am lookig for a better way to save my other eye.
Thank you again....

[zelmo]

Dr. Hagan,

Thank you for your advice and kind thoughts. I will follow through on all the points that you made. I appreciate the help and support from all of you on this forum.

[AnnaE]

Maybe your early doctors should have referred you to a glaucoma specialist.

My early doctors did not refer me to a retina specialist. They should have--years ago.

I am glad you got some clinic recommendations from the doctor here.

Best of luck to you.

[zelmo]

That is  my thought......in my ignorance, the glaucoma issue was secoundary and having 20/20 vision through cataract surgery to continue basketball officiating was my "focus". That was  vanity and I'm dealing with it now.
I may have assumed wrongly, that the glaucoma issue was in hand by the opthamologist who did my cataracts. Dr Hagan has it right ...it's important to get some answers from however many Dr's it takes.
This forum was here for me two years ago when I should have taken the time to know. My younger family members who may be at risk will know.
Take care of yourself

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

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

I messed up with the net addresses

I was suggesting Mass Eye & Eye Inf in Boston
Tufts New England Eye Center in Boston

JCH IIIMD

[AnnaE]

We are all "so vain."

[AnnaE]

We are all  "so vain."

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

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[zelmo]

Dr. Hagan,

In  another post on your forum, I came across concerns from people that had suffered optic nerve damage from the retinal detachment itself; if I read it correctly. Possible ?  When the retinal specialist first discovered my detachment, he made the comment that it had been going on for quite sometime.  Could that be  possible... ?

In light of your comment that glaucoma could be as much of a surgical complication the surgery,  should pursue that avenue as well ? . It would have have implications for my other eye, which I was told is “normal”. at this time (other than the flashes and floaters).

When I asked for med records  before my consult with the glaucoma spec. I was told not to worry as they had been communication and he was aware of my situation. I don’t want to be paranoid, but I want to protect my other eye.

Just to add to my history. I had complanied to my cataract surgery opthamologist for over a year while having my glaucoma monitored, that I was getting a “veiling” over my vision, but not until I got the flashes a year later was I referred to the retinal specialist. I was told by the nurse that I perhaps had dry eye, and spent the year thinking I was dealing with that.  

Is it worthwhile to ask for a consult with each of the doctors involved with my copies meducal records available at that time as well as for subsequent opinion ? I have gotton excellent imergency care from doctors invoved and I like and resect them. But, with each answer I have even more questions.

Boy...what a case for mandatory electronic record keeping....

[distracting]

Dartmouth Hitchcock in NH has an excellent ophtomology department if that is closer than Boston for you. Another choice in Boston is OCB (www.eyeboston.com). It is a very large private practice with an excellent reputation.

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

There is better continuity and better ongoing care if you ask your questions of the Eye MDs that have taken care of you in the past especially if you have good confidence in them.

JCH III MD

[lhn]

Hi Zelmo- I read your posts with interest because I have lost most of the sight in my left eye due to a retinal detach.  I understand your desire to know what happened to you and why you lost your sight,that is completely natural and part of the grieving process that I have had to go through as well.  I am just a little concerned about your comments regarding your good eye.  You said it is normal except for "flashes and floaters"..  I don't know how normal flashes are.  If I had a flash in my good eye I would immediately go to my dr. because that is an indication that something is possibly happening with the retina. Maybe I am just paranoid at this point.  You are doing the right thing to go to the experts and get a complete work up on both eyes.

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

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[zelmo]

I didn't want to clutter my post with too much extraneous info., but yes I do have flashes in my left eye....and it was those flashes that I complained about to general opthamologist that sent me to the retinal surgeon. He found the detachmet in the right, when I told him I had a veiling accross my right. I am being screened every few weeks since my op. in both eyes....he said this will go on for quite a while because I am at such high risk. By normal, I was refering to eye pressure and cupping with respect to the right eye which, I was told, is 95% gone rel. to optic nerve by glaucoma spec. Again....I sit here and wonder how, with little confidence in any or or my treatment.

Thank you again for your concern and suggestions.

[zelmo]

Please excuse the previous post TO------- lhn. I can use my eyesight now as an excuse for highlighting the wrong "name" ie. Dr. Hagan

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

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[AnnaE]

I think you need to re-post your last questions that have not been answered. I do not know about the optic nerve part. The kinds of faulty communications that have occurred with your doctors has happened to me, also. I have been very high risk for years, yet my ophthalmologist did not refer me to a retinologist. I found my own detachment one evening.

Is your left eye OK? I think you know how to monitor flashes and floaters. Watch out for a sudden increase in both, especially a large number of floaters that look like pepper exploding or racin in your eye. Of couse, cup your other eye and watch for the curtain.

I am really glad that your retinologist will talk with you and explain.

I am sure the doctor will answer your other questions. They are very busy and sometimes questions get missed.

Good luck, especially with that right eye. I still have some vision is my left, and it is so comforting, despite the loss.

[zelmo]

I feel good about the help I've received on the forum. I am proceeding forward for a second opinion and I have started to procure all my medical records from the  physicians I've had and will ask for a consultation with each.

It is comforting to hear from you and others that are walking  this path as well and the good Dr's willing to listen and respond in such a compassionate way.
Thank you all so much.

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

You're welcome and good luck.

JCH III MD

[AnnaE]

Yes the doctors here are wonderful. I am glad you are proceeding with the consultations, as the doctor here ; the second opinion should also help. Best of luck.

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

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