Retinitis Pigmentosa Support Group

How many people here with RP and cataracts have been on the Vitamin A therapy. While I still am an advocate of it and am aware that it there is the potential for liver problems, I just read in a beauty magazine that excess Vitamin A can cause cataracts? I have never heard that one before.

Hi

I don't know much about the Vit A treatments but have a question to pose to the group ... hoping to to gain some experience, strength and hope from others....

4 weeks ago I had cataract surgery with a Restore multi focal lens . I opted to have the surgery done in Barbados where I am living now by a surgeon who came highly recommended. Everyone I spoken to had excellent results with their new lens. And although he does this type of surgery often he had never implanted this particular lens into an RP patient before. After 3 weeks I am very frustrated because even though I can see cleared in the distance, I can’t see well enough to read and the surgeon is advising me to be patient. He indicated that he is seeing signs of macular degeneration which he had not mentioned before the surgery. Instead of everything being brighter and clearer, as the days pass I feel like my sight is getting worse not improving. Even the bright lights in my office seem to be getting dimmer.

Please can any of you RP guys who have had this surgery let me know if you experniced the same thing and what was the outcome and if I can really expect to read clearly sometime soon

Look forward to your replies

M

M, I only had a single focus lens put in. The only feedback I got from the doc was that my astigmatism kicked in and resulted in the distance not being as good as it should have been so I am now wearing glasses for distance and reading. Sorry I can't be more help. cdilj

M, I think your situation screams for a second opinion. The sentence "didn't mention before the surgery" is a big red flag.

I'm working on getting an appointment with an eye surgeon whi is here from Scotland now and also possibly with someone at Bascom Palmer in Florida.

M

I'm worried that perhaps you may be developing CME which can occur after any surgery. It is fluid build up. I had the cataract surgery and was told that I wouldn't have to wear glasses but ended up in glasses within a week of surgery. It is common after cataract surgery to need ot go into bifocal lenses. My doc was the best in the region and did my lenses one for distance and one for reading. But going from being completely nearsighted to having to wear bifocals was a total adjustment. It took me a good 3-4 months to adjust to the changes that occured after the surgery. Things were clearer but somehow different.

It is also quite possible that you are developing the scar tissue around the implants as well. I had that happen within a couple of weeks of surgery. My vision went down hill rather quickly. If that is the case, very easily remedied. The YAG laser will place a hole in the center of you lens sack and the scar tissue will not ever reform over it. Very easy procedure done in the doctors office, and completely pain free and immediate results.

If you vision continues to diminish, get in with any opthamologist to be checked for CME. Cystoid Macular Edema.

Keep us posted on how you are doing. So sorry I didn't see you post sooner. I'm sorry your surgery wasn't everything that you had hoped for, but there is still some adjustment time to consider as well. Take care and keep in touch.

Beth M

Hi

Dr ruled out CME. Says the lens is implanted perfectly, dead centre and everything is healed and no singen at all of any scar or inflamation (my husband even had a look and confrimed this) Yesterday I cou dnot read ht econputer. Today I can and my distance vision has gone from great and sharp to blurred. He has prescribed glasses so we'll see where that leads. Still wokring on getting a second opinion from someone in USA

thanks for your support

M

I am scheduled for a cataract surgery this April, but I was told after a retinal scann that the results will be unpredictable due to thinning central area of retina. My doctor also recommended for me to see if the cataract surgery would disqualify me from possible stem cell research study participation.

Do you have any more info about this, Norka? Would having cataract surgery disqualify you to participate in studies?

One done and one to go. I decided to go ahead and had my cataract surgery. I spend about a week reading about all types of research studies for RP and all of them are only in stage one (beginning human trials) with years to wait for mass testing. My eye doctor recommended for me to go ahead with cataract surgery to claim my life back now. As frightened as I was I am glad I did it. I had my left eye done yesterday and what a difference! Sure it will take time to get used to not being able to focus in and out at will but the clarity of the world around me is ammazing. Next week I will have my right eye done and will post on the progress. My teen daughters and husband loved looking inside my eye through the enlarged pupil and see the implant reflecting incomming light.

Norka