Hey everyone, I have massive scar tissue on my right eye and need more treatment for angiomas but the doctors are scared that my retina will detatch if I have more treatment.
I have been having treatment since I was 8 years old and have already had a scleral buckle put in due to a detatchment when i was 15 and a vitrectomy. The doctors were talking about removing the scar tissue untill they realised that I had already had the vitrectomy.
Has anyone else had this kind of treatment follwing a virectomy? I'm getting the impression that its not a good idea, but surely then that means my eye will just get worse??? I'm only 23 and the prospect of losing my eye which my mum did at 40 after about 5 years of battling with detatchments and scar tissue is scaring me a little bit.
thanks
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Aye eye!
- By claireabell
- Posted December 16, 2008 at 5:12 am · 5 replies
- In Medical treatments that worked for me
- Shared with the public
- Edited December 16, 2008 at 6:21 am
5 replies
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- Newest first
- By Blind_Kiwi
- Posted December 16, 2008 at 4:50 pm
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Hello,
Have you been seen by Dr Zedenik Gregor who is at Moorfields and Harley St. He was fantastic while I lived in the UK and knows VHL etc very well. I too have been through the tears, detachments, buckles, jelly seperations etc. In my case too many treatments caused my eventual blindness. However I have no regrets with the process I went through trying everything. Good luck.
- By claireabell
- Posted December 16, 2008 at 5:15 pm
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It is very strange you should say that I have been refered to him by Proff Tony Moor, Im seeing him the day befor christmas eve to discuss possible options. Sounds like I will be in very good hands.
Thanks alot
- By MamawtoTeah
- Posted December 17, 2008 at 10:00 am
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I have had two vitrectomies done on my right eye and the retina specialist is wanting to do a third one. My local ophthamologist is advising caution, however. We have decided to wait and see if my vision totally deteriorates and then re-evaluate if necessary. I wish you the best. Fighting for our eyesight is a scary, but necessary, evil.
- By Michelle76
- Posted December 18, 2008 at 9:43 am
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My husband has had one vitrectomy in his right eye, which did eventually lose vision, but that was no surprise - it was in bad shape before we even tried that route, and it was more of an experiment to see what would happen. There was some brief improved vision, but not for long.
He has now had two vitrectomies in his left eye. After the first one, he developed a cataract that had to be removed (a common s/e), but not long after the cataract surgery, his retina detached again. They tell us the tumors are still dormant, so this is likely a coincidence.
But we headed into a 2nd vitrectomy on that eye this last August. It was definitely a harder recovery. It'd been just over a year and a half since the previous surgery, and although that's a pretty decent time gap, it's still a lot of trauma for the eye. He developed some sort of scar tissue in the front of his eye that fortunately was able to be resolved very quickly with an injection in his eye. The recovery went pretty well after that, but unfortunately, literally the day he was supposed to return to work, his vision dropped dramatically again. The next day we saw his doc, and sure enough - another detachment.
We've since been to the Wills Eye Institute in Philly, and they recommended a fairly dramatic surgery called, I believe, a retinotomy. Although the potential reward is very high, the risk is also very high - if it goes poorly and the retina "rolls up like a window shade" (as his doctor here puts it), it will be lights out. We tread very, very carefully treating this eye b/c my husband is only 31 and we have 2 small children and we want to do whatever we can to preserve even partial vision. We are also considering a silicone oil bubble, and that is a conversation we will have with his doctor early next year, after we've gotten a 2nd opinion.
So...I wouldn't NOT recommend a vitrectomy. And it's been 8 years since you had your first one, so the eye is likely better healed and you hopefully won't have some of the exacerbating circumstances we've dealt with after this most recent surgery. But, the 2nd one can definitely get trickier. Still, you do have one good eye, right? Then if there is an eye to be more aggressive with, I think it's this one. Because no matter what, you have one good eye remaining. And maybe another surgery stops the progress in it's tracks so that if your other eye should flare up, you continue to have an eye with vision in it.
I dunno. This is all my opinion as the bystander and a non-medical professional. I can totally understand your fears, though, and the story I just shared may not help much with that. But as someone who has been through what you're considering very recently, I wanted to give you the honest truth of what we've been through.
I should finish by saying that I don't have any regrets about the 2nd vitrectomy. The only other alternative was just leaving the detached retina, and what good would that have done? At the very least, we are constantly buying time, even if it's just a few months.
Good luck with your decision!
- By joyceg98
- Posted December 21, 2008 at 1:51 pm
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When the retina detaches, two things happen. The retina is the "film in the camera". The film is out of place, so the eye cannot collect the visual information to pass to the brain. Furthermore, the blood supply to the eye is compromised, which can cause the eye to die.
The first priority is to reattach the retina and restore the vision. Even if there is no hope of regaining the vision, the doctor might still want to "save the eye", but that does not necessarily mean restoring any vision. Be sure to have a frank conversation with the doctor about what is the best possible outcome, and what he expects is most likely. They may be two different things.
This is always a difficult decision. You need to have a very frank discussion with the doctor -- not just about what surgery is theoretically "better" than another, but about which one is most likely to succeed with this eye, and for you. Based on the history of how you and your eye have responded to earlier therapies, the doctor should be able to provide some guidance. And there will still be risk.
Does your eye tend to bleed easily?
What precautions can you take to limit bleeding? (don't take any blood thinners, including aspirin, for how long before surgery)?
How should you limit your activities, or exercise routine, before or after the procedure? and for how long?)
It's important to ask these questions in advance, so that you can plan your life appropriately around it.
Some doctors say you should lie face-down for weeks following a vitrectomy. There are foam pads you can buy that are designed to help with this. I searched for "vitrectomy pillow" and found several:
http://www.kellycomfort.net/face-pillow/
http://www.vitrectomy.ws/
http://www.vitrectomymirror.com/
This is not a simple laser treatment, it's a big deal. You will need to invest time and attention to give it the best chance for success. Ask lots of questions, and follow instructions carefully.
All best wishes,
Joyce
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