The following posts from the ROP list explore the question of whether scleral buckle or vitrectomy should be performed on a child with good vision in one eye and poor outcome in the other. Opinions on the effectiveness of both procedures are also expressed. The ROP list was moderated by Dr. Scott Richards until August, 2002. The list has closed now. For more information about lists of interest to people with visual impairments, please visit the email list index.
Date: January 19, 1999
From: Dale Lips
Dear Dave, You are facing a very difficult decision. Our situation isn't exactly the same because Alex was 9 when we were faced with the same question. He had stages III and IV ROP in his two eyes as an infant. Luckily, the ROP regressed in both eyes without any detachment (they were just experimenting with cryo and laser back then), but did have scarring, etc. He was 20/200 in both eyes until age 9 when his left eye suffered a complete detachment. We didn't catch it immediately. When we did, one ROP expert locally said not to bother with the surgery because it would be very tough on him and he would end up with a blind eye anyway. The other ROP expert had a very different viewpoint. He felt that if nothing else, we would be able to save the integrity of the eye. If he could successfully re-attach the retina, perhaps Alex would benefit from future technology. If we left things alone, the retina would gradually not be viable, the eye would not grow, etc. We opted for the surgery. He did a scleral buckle. The retina was smooth and attached for about a year and a half. Then the retina detached again. The same doctor advised surgery again with a vitrectomy and laser surgery. We flew to UCLA for a second opinion. That doctor concurred with our Phoenix doctor. The surgery was "successful" in that Alex's retina is attached. However, he only has light and shape perception in that eye now. (After the first surgery he had gone from 20/200 to 20/600.
In your case, you have a very tiny baby so it is different. My advice is to get another opinion if you possibly can. Also, get the opinion of the neonatologists on how well she can tolerate the surgery -- I'm sure you have already done that. My thoughts and best wishes are with you -- please let me know if you have any questions about the above. I realize that I am not being very detailed, so I would be glad to answer any specific questions
Dale
Dave Hill wrote:
"I asked Dr. Newell several days ago about the scleral buckle which I saw described on the ROP web site and he said that it was relatively ineffective?"
Anne Merideth wrote:
"Sounds similar to my son. I don't know what surgery they are thinking of, but my son had a scleral buckle put on and the surgery was not that traumatic. (He had been discharged from the NICU for about 2 weeks on the time, wasn't on O2, he weighted about 6lbs). If it is vitrectomy, that has an almost 0% success rate, so I wouldn't do that. But scleral buckle has about a 50% success rate.
Date: January 20, 1999
From: Guido Bracke
Our daughter (*19. Dec. 96, 27th GSA) has a complete retinal detachment in her left eye despite cryotherapy. When this was detected (at the 45th GSA) the ophthalmologist did not recommend further surgery (vitrectomy) because of the low success rates. He told us that the right eye will have vision (although macula dragging). He would not do this surgery on his own daughter for one eye only. Since we experienced the stress of the first surgery (cryotherapy under anesthesia) which led to a severe loss of power (strength) on Valeria we agreed. She still can not walk due to the lack of power (strength) but she wants.
The decision has to be considered for each case different (scleral buckle vs. vitrectomy). But if you want to have a surgery ask for the best address (e.g. Dr. Trese, Detroit, is well known for this)
Best wishes
Guido
Date: January 20, 1999
From: Sarah J. Blake
Imho, the success rate of vitrectomy depends a lot on who you talk to and who does it. It doesn't yield such good results as laser, but it can give some moderately usable vision, especially in instances where the retina is still partially attached. This is just my opinion, though, but based on a lot of reading and knowing several people who have had vitrectomy or whose babies had it. This is not to say that I don't appreciate the risks, but I think it might be wise to maximize what is left in the poorer eye if possible. That is just my opinion as an adult with ROP. If I had a choice, I would want it done because even that good right eye can be unstable in some cases if complications occur. I wouldn't go to having surgery after surgery, but in my understanding laser treatment is not adequate for stage 4.
Date: January 29, 1999
From: Susan Wolak
My son has had a scleral buckle and vitrectomy in both eyes that was unsuccessful. The Doctor who did the surgeries was an excellent retinal surgeon but I later learned he only did about 6 babies a year. I am not a medical expert so I can only go by what I have found out from experience. I have been told that there is quite a difference between an adult eye and an infant's eye. If I was going to put my child through surgery I would want to first make sure that the Doctor regularly operates on the eyes of infants with ROP. My son's surgeries were long and his eyes very swollen after the first experience. I have seen a child who had the same surgery by a more experienced Doctor and the eye wasn't swollen and the surgery much shorter.
When I used the term "did wonders" I was referring more to the expertise of that particular Doctor in the area of ROP rather than the treatment as such. We are Canadian and there is a real shortage of pediatric opthalmologists and our surgeons operate mostly on the elderly. Some of the issues have to do with the population size. We travel to the States and the Doctor spends more time explaining and taking a general interest in my son. He was able to do a number of vitrectomies and my son now has light perception in both eyes (He was stage 4 & 5) and some sense of movement. We will not know until Daniel is older how much.
It is a very difficult decision to make. I always say that as a parent you have to trust your own instinct. I have spoken to parents who decided against surgery and I would support that decision as well. In our case we felt that we had to do whatever we could, so we could tell Daniel we did everything. If I could go back I would make sure that I had a different Doctor the first time but I didn't know the questions to ask.
Date: February 1, 1999
From: Scott Richards
Vitrectomy is considered standard practice for stage 5 and many stage 4 detachments for ROP. It would be a mistake to imply that vitrectomy should not be considered for these cases. One should, however, look at the whole picture (or whole patient, as some say) when considering vitrectomy. The anatomic success rates are low, and the functional success rate is even lower. If both eyes are affected, it would make sense to me to operate on both eyes in hopes of getting some useful vision in at least one eye. If only one eye is affected, I have my doubts about the procedure. Even in the best case scenario, the vision will never be as good as the fellow eye and will probably not contribute to the child's overall level of functioning. Parents need to consider whether the benefits of a small amount of vision in the eye justifies the time, expense, and discomfort for the child. This is what I see as one of the great benefits of this group - the opportunity to discuss these issues with both parents and patients who have been there and made those decisions.