Hello all,
I'm curious if anyone has experience with lens replacement surgery as a Sjogren's patient. I am a 41 year old male and have had Sjogren's for 8 years, with a great deal of problems with my eyes (of course!). I have a high level of nearsightedness and would love to be able to have corrective surgery to fix this. I'm very aware of the dangers of Lasik, etc., but I recently saw a new opthamologist who told me about new types of IOCs that, according to her, do not contribute to or increase eye dryness and can be performed on Sjogren's patients with little risk. It is my understanding that the procedure is very similar to cataract surgery, which I know is extremely common. Of course, being skeptical and not wanting to do anything which might make my eye problems worse, I went to a dry eye specialist to get a second opinion. I have a history with this doctor...despite paying him thousands of dollars over a number of months he did very little to improve my condition and I had pretty much given up on him, but I wanted to see what he had to say. As expected, he advised against it and said I should come back to see him again to try to improve tear production (not going to happen).
Anyway, does anybody have any experience with lens replacement surgery (either IOC corrective surgery or cataract surgery)? If I felt I could do it with low risk of worsening my problems I would do it in a heartbeat, as it literally would be life changing for me to not have to wear thick glasses all the time. I think my glasses contribute to eye strain and headaches, and I don't see as well as I did with contacts. I could also participate in sports, running, swimming, etc like I used to. Of course, I don't want to take a big risk either.
Any info or advice would be greatly appreciated!
Thanks!
No experience with that type of eye surgery. In the next couple years I will have to have cataract surgery on both eyes. I also wear "coke bottle" glasses as I got allergice to conact a couple years prior to my gp sending me on my jorney to diagnosis (that took 6 yrs) to Sjogrens.
It is not unusual to get different opionionsi from different doctors. Maybe you need a third opinon or to find a eye specialist that really knows Sjogrens. It sounds like the one dr is just putting you off so try another. Good Luck!
I've only had experience with this type of surgery way before SJS. The surgery was for cataracts. You would need to put drops in your eyes (steroids) after the surgery for inflammation and I know they were drying to my eyes. The might have developed a less drying drop by now since mine was done in 1993. I do know that I would think really hard and long and get somemore eye doctors opinions. I don't want to make mine anymore dry than they are already.
Best medical intervention I have had!
OK--medical help with appendicitis and birthing babies was pretty useful. :D
But seriously, I had severe myopia; coke bottle glasses (Rx: -18). Could not wear contacts due to dry eyes.
I tried restasis and punctal plugs. I was "allergic" to both. Headaches.
My night vision was gone, as was my DH's. We pretty much relied on our teenage sons to drive after dark.
Losing night vision was the tipping point to go ahead with surgery.
At age 55, I had lens replacement surgery. Totally amazing. The very next day, I swear I could see all the way to China! I still need glasses, progressive trifocals, especially for reading. But they are not thick. Also, they hide circles under my eyes.
One caveat: I believe there can be some complications, such as double vision. I developed that after a couple of years, so my eyeglass prescription was adjusted to include prisms. No big deal, especially compared to my former life as a nearly blind woman. Legally, I can drive without correction, although my eyes get tired.
After the surgery, I realized how limiting my poor vision had been. I still have Sjs issues, but life is much easier.
Generally, I am not a proponent of surgery, but this worked out very well for me.
My 86 year old dad and I laugh about me having the surgery before he did.
Best of luck. Feel free to PM me.
beth
I had my cataracts done a couple of years ago. No problems at all! Then I had to have the capsules behind the lenses lasered. Again, no problems at all. I'm on Restasis and eye drops, and sometimes the gel in my right eye.
I hope it goes as well for you!
Prunellayou are a rarity in the "coke bottle glasses" and any kind of eye surgery is chancy the bigger the correction. Glad you have functional vision.
I could write a book, but won't. I was -10 and had Lasik surgery in 2000 before any diagnosis of SJS, or even a hint of it. I had nothing but trouble with dry eyes, painful dry eyes. I spent most of my work day with an icepack on my eyes on break and on lunch. My vision was double in the left eye and I got Trigeminal Neuralgia in my left eye. I have that same pain to this day but Lyrica does help.
I developed cataracts shortly after Lasik. This is very hard to measure your correction after Lasik because your eyes are not in their original shape. After Lasik, I had my left cataract taken out and instead of coming out around -1 or plano, I came out -4.5. I was halfway back to my original correction in that eye. Now I was seeing two different images because of the difference in correction of my eyes. I refused to let the dr to anything else to me. I had to file for disability because of my eyes and got it on first try.
It's now 12 years since the Lasik. I still have a cataract in my right eye but I'm afraid to have it fixed because of the uncertainty of outcome. I am only able to drive because one of my eyes is the best at 20/40 or 20/50. I have to have my drivers license checked next month and am afraid I won't be able to drive with or without glasses. I have glasses I wear while driving and reading. Most of the time in the house, I leave them off because I am more comfortable like that.
If a doctor comes up to you and "has just the thing for you" and "you're the perfect candidate" run the other way. Take lots of time and get second, third opinions. If a optometrist is urging you to have refractive surgery, he gets a cut when he sends you to the surgeon. I am so sorry I ever had Lasik and it's the worst thing I've ever done. You might find some info on dry eyes and surgeries on www.dryeyezone.com. I have no interest in this site. Lucy If anyone wants to send me a PM, please do so. I don't want to scare ppl--yes, I do, but I wish to heck someone had warned me of the harmful effects.
Hi Charbor,
I've been in Ophthalmology for 22 years so if you don't mind I'll give you my opinion. You really don't want to be going into the eye more than once in a lifetime and that's for cataract surgery. These days cataract surgery is very easy for the patient and the physician....tiny incision so there is no problem with drying of the cornea...incision closes on its own without sutures....and there are no anesthetic shots in the eyes as before. You may use some Pred Forte after the surgery and with an antibiotic drop but that's temporary so any drying from the Pred Forte will be temporary.
I would hold off on the ICL's (intraocular contact lenses) and wait for your cataracts to mature or see if you can find a surgeon who will do a clear lens exchange. Then you're only experiencing one procedure versus having the ICL's put in and later to have the ICL's removed with your crystalline lens (or cataract) to then insert an intraocular lens. Yes, if you have the ICL's they will have to be removed when you have your cataract surgery so they can place IOL's in the eyes.
I hope this makes sense....as I said you may be able to find a surgeon who will remove your healthy crystalline lens and replace it with an IOL to improve your vision now rather than wait until you get cataracts. I would rather have this done than the ICL's and later IOL's after cataract surgery.
Jill
Charbor
Have you ever heart of the Boston Scleral Lens? The clinic is in Boston (duh) and they are quite effective in dealing with most problematic eyes. It might be worth it to visit their website. Bostonlens.org.
Yes, I have been there and could not be helped because of the damage done to my left cornea by Lasik. Lucy
Before I knew I had Sjogrens about 7 or 8 years ago or so, I had my cataracts removed. I was only in my 40s, but it runs in my family. I paid $5000 extra to get a Crystalens. I can both read and see distance most of the time without glasses. Neither perfect 20 20, but with cheaters for small numbers, I do pretty well. I'm sure they're a lot cheaper today.