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• silicon oil reinjection
• Posted: 2011-04-08 13:02:48 By
• Hello,
  I have a 5 year old who had previously undergone retinal attachemnt and silicon oil injection. His current doctor told us in the last visit that the schisis that was stable is spreading. So, a silicon injection again to fill it up ( its partially filled now) will keep the layers intact and prevent it from spreading. Is it wise to go ahead with the surgery or stay with the schisis.
  
  Expereiences and suggestions from parents of children similar age welcome. I have read papers that say 'surgery wise less is more for retinoschisis' . I also read some articles on how silicon oil stabilises foveals schisis. Anyone with past experiences where the kids underwent reinjection of silicon oil
  OR
  where kids got their oil removed and schisis remained unaffected
  OR
  where kids had the one surgery and still have the oil in there
  
  PLEASE COMMENT!
  Looking for knowledge to make the right decision.
  

• Suggestion
• Posted: 2011-04-19 19:34:13 By Michael P
• Hi, I am very sorry but I know nothing about this procedure. I am very concerned. Can your doctor provide you with name or contact of others who have successfully had the procedure? If it were me or my son I would contact doctor Fishman in Chicago. I would also get another opinion form another retina doctor not affiliated with this doctor.
  
  Trusopt is the only treatment I know of for schesis and it did work for me. In my opinion this is the product he should be on first to see if it works. Given his age you will know very quickly and there should be a significant difference given his age.
  
  From my experience any time the retina is messed with there is damage. I have had a detachment in the 1980's and significant laser afterwards. That eye, my right eye only sees a hazy light and sometimes figures but in spots.
  
  My detachment was repaired with a buckle not the new procedures used today. So, I realy can not comment on how well it works or if it should be done.
  
  Give trusopt a try and have his eye scanned with an OCT to measure any improvement. Technically if the cysts are reduced the damage later may be prevented.
  
  Good luck and let me know if there is any way that I can help.
  
  MikeP

• silicone oil
• Posted: 2011-05-02 13:19:53 By Sarah E
• I also have a 5 year old with XLRS. When he was 1 1/2 he had surgery for retinal detachment. In addition to laser, he also had silicone injection. Follow-ups showed that his retina was smooth and flat, so he had another surgery 6 months later to remove the silicone. As soon as the doctor removed the silicone, his retina "crumbled", so he put the oil right back in. So in our situation, the silicone is necessary. It is at least keeping the retina smooth, even though it looks like the retina cannot reattach. For my son, the benefits of keeping the oil in the eye outweight the risks of cataracts developing.
  
  Dr. Trese in Michigan was the doctor who performed this surgery. We see local doctors (Utah) for follow ups, but if we ever needed surgery again we would go back to Dr. Trese.
  
  Also, both of my sons (ages 5 and 8) have been using Trusopt. When we first started it we had our doctor closely follow progress with OCTs every six weeks. We now just do OCTs every 6 months. For us, Trusopt has not seemed to help at all. We are keeping with it because it certainly won't hurt, but unfortunately Trusopt may not be the answer for everyone.
  
  Good luck!

• No Benefit from Trusopt
• Posted: 2011-05-05 08:15:12 By Michael P
• Hi Sarah,
  
  There are two benefits from Trusopt. The first bing an improvement in vision acuity. A number of parents an this board have reported improvements such as 20/70 to 20/50. Otheres have reported no improvement. The other benefit is little discussed. The Trusopt shrinks the cysts in the retina. This is measured by the OCT and accoring to my Doctor it is expected that the benefit from shrinking the cysts will reduce damage from the seperations in the retina caused by the cysts.
  
  I believe that doctors do not talk about this with parents and it is just unknown. You can actualy view the OCT, see the original cysts and see how that same cyst is gone on later OCTs.
  
  Because CXLRS is a degenerative disease it is my hope that by shrinking the cysts some of the later damage caused by this disease will be delayed or prevented.
  
  Ask you doctor to see the original and followup OCT to confirm that this is infact the case. From my expaerience I did not have an improvement in accuity but the cysts shrank and are gone in as much as a year of taking Trusipt.
  
  Another benefit is the presures in the eye are reduced and for me this seems to help steady my eye. I don't know why this is what I experience but I need to continue to use the drops for this benefit.
  
  After taking this eye drom for some years I find that one drop at bedtime is sufficient to maintain the benefit-eye presures are low and cysts are still gone.
  
  All the best.
  
  MikeP

• silicone oil
• Posted: 2011-05-07 11:55:27 By Ang s
• Hi Sarah,
  Thank you for the reply. Yes my son is on Trusopt for the past 5 years. and we are going to Dr Trese for a 2nd opinion next week. Last year his present Dr Tawansy wanted to remove the oil due to cataract suspicion but now he recommends refilling it because he feels the schisis is spreading.
  I will let the group posted as to what Dr Trese thinks the eye is doing and regarding the addition of silicone oil.
  Did your son's vision deteriote after refilling silicon oil again?

• silicone oil
• Posted: 2011-05-11 12:48:02 By Sarah E
• Regarding your question: "Did your son's vision deteriorate after refilling silicon oil again?"
  
  That is hard for us to say. When he had his retina detach, a significant portion of his retina separated. His retina kind of fell down and hung over the intact portion (obstruction of the macula by an overhanging bullous schisis cavity). The surgery was successful at stopping complete detachment (the laser acted as a "weld" to stop the splitting). He hasn't had any further deterioration since the surgery, but where the initial detachment caused so much damage, there wasn't much left to evaluate further deterioration.
  
  Dr. Trese explained it to us that the silicone would help keep the retina flat. The silicone isn't going to damage the retina in any way. The problem with the silicone is that it can cause cataracts. We are kind of sacrificing the lens to give the retina a chance, because it isn't as big of a deal to replace the lens later on. My son is supposed to do lots of face-down "tummy time" so the silicone floats to the back of the eye and the remaining vitreous can bathe the front of the eye to help prevent cataracts. He's had the oil in for 4 years now and the doctors keep a close eye on the lens and it looks very healthy so far.
  
  I hope that your visit goes well with Dr. Trese. I think he would be the best resource for helping you weigh the benefits vs. risks of silicone, and if it is recommended in your son's situation.

• oil
• Posted: 2011-05-27 15:13:05 By Steve L
• ang s:
  
  Our son is currently treated by Dr. Tawansy. Can I ask why you are getting a second opinion from Dr. Trese?

• oil
• Posted: 2011-05-27 15:10:45 By Steve L
• our son developed xljrs when he was 2(he is now 5). After his first retinal detachment, oil was injected. Within the first year, the oil leaked out and surgery was required to replace it. Over the last few years, the oil has leaked out in small increments. His retina has remained stable; however, he developed a cataract last year and it was removed. He uses Azopt twice a day and we patch his eye at least 2 hours a day.

• cataracts and cxlrs
• Posted: 2011-05-29 11:35:21 By Michael P
• Hi Steve,
  
  I have had a cataract in my lift eye as far back as I can remember. Most likely for the rest of my life it will just be there and remain untreated.
  
  Sometimes it is not always best to treat every eye condition, we have to weigh the risks with the benefits. For me with my left eye the only eye with usable vision, I can not rist loosing sight when I can see even with the cataract.
  
  The retina is very sensitive and most of the things we want to do to fix it may result is further damage. I know that as parents we want to do everything and may not always consider the risk.
  
  I am not saying that treatments are wrong, I am saying that we need full information on the risks and to consider the risks very seariously. Because in most cases we can not go back to what we had.
  
  All the best, you are all in my thoughts and prayers.
  
  MikeP

• Posted: 2011-06-13 22:14:15 By Ang s
• Hi Steve S.
  thank you for the valuable information. Yes, that's my fear if we add more oil it might cause cataracts. But I am no doctor, let the doctors decide. Answering your question why a 2nd opinion? Dr Tawansy is a remarkable doctor. When Dr Trese saw my baby after the first surgery he commented "Dr Tawansy has done a truly admirable work in saving this child's vision". In reality just an extra pair of eyes to evaluate where the benefits outweigh the risks. This time we were trying to avoid going all the way to Michigan but now we decided we will. Our appointment got cancelled as Dr Trese had something else come up that day so now we are going only in July. Will let you know what he recommends.
  

• oil
• Posted: 2011-07-27 14:11:17 By Steve L
• ang s
  
  I didn't see your response until today. I forgot to mention that our son initially had the oil in for about 9 months with no issues. Oil was removed and within days his retina detached. Overall, he has had the oil in for 3 yrs. In retrospect, I guess a cataract is better than a detachment. His lense was not replaced but rather it is compensated thru his glasses. Dr. Tawansy didn't want to change the lense out everytime his vision changed. Aside from a small leak, he has been stable for 13 months. We are now seeing the doctor every two months as opposed to every month. This is nice since it takes us 3 hours one way to see him.

• silicone oil
• Posted: 2011-07-28 20:00:34 By Ang s
• Everyone with silicone oil,
  we went in for an examiantion under anasthesia with Dr Trese, Michigan. He agreed that there is further splitting in one eye and that the same eye has less oil. He however scared us away from surgery for adding more oil. He just said things are delicate lets leave it alone.
  so for now we have decided that we are not doing anything other than praying to keep the eyes and the vision going.
  
  thanks to all especially Sarah and Steve for sharing your silicone oil stories.
  Angie

• silicone oil
• Posted: 2011-09-06 13:36:38 By Steve L
• Angie, our son just saw dr. tawansy and Thank God he is stable. Other than a small oil leak, he has been stable for over 18 months. Doctor still wants us to patch his good eye for two hours a day and continue using Azopt twice a day. Are you still seeing Dr. Tawansy? Do you live in LA? We have only met one other family with xjrs.