cruzandfamily
17 posts
Sep 05, 2008
6:56 PM
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We saw the new doctor on Tuesday. It's three hours away, but this doctor was great. He explained was he was doing, told me things so I could kind of understand, and just made me feel at ease. He's also friends with Bobby's first doctor from Miami, so they will communicating. He did tell us that Bobby would need a minimum of four more surgeries, about six weeks apart. I still don't understand all the lingo, but he talked about exudates, and stuff floating around. On September 15th he will have his second laser surgery, with
Avastin and cryotherapy. Again, I am still trying to learn what all this is. You would be surprised how many times I come back to this site for definitions. Hopefully this all makes sense, and if something doesn't sound right or normal...please let me know. :) Christy
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jakesmom
37 posts
Sep 05, 2008
9:48 PM
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Christy,
Thank you for sharing. You will be surprised at how soon you will be become the "expert" on Coats' and know all the lingo!
I would love to hear about the Avastin.We have been trying to stabilize our son Jake's leakage for almost two years now. He is still a toddler, but it would be great to hear what is being done with older children just being diagnosed. I hope the 15th goes well for Bobby!
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Jennifer
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Jacobs Parents
122 posts
Sep 06, 2008
7:02 AM
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Christy,
Can you tell me the name of the doctor that is going to use Avastin on Bobby's Coats' eye? One of the other posters (Ellen) was interested in Avastin, and she lives in the Southeast. See the topic "Dylan and Coats Disease").Thanks, and take care
Dave
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cruzandfamily
18 posts
Sep 08, 2008
8:51 AM
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The first doctor was Tim Murray at Bascom Palmer in Miami. The new doctor is Thomas M. Aaberg Jr at http://www.associatedretinalconsultants.com.
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Tracey
10 posts
Sep 12, 2008
7:36 PM
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Christy: All the best to you and Bobby on Monday Sept 15th. I hope that the surgery is successful and I will say a prayer. Keep us updated on the results.
Take care, Tracey.
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cruzandfamily
20 posts
Sep 16, 2008
9:48 AM
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Bobby had surgery yesterday. The doc injected the dye, and said it was worse than what they thought. We go back for a checkup Oct 2, but he will have to have another surgery in a month. He showed me pictures with a lot of what I think was fluid. He said it's swollen. He is doing great though. :) My other question is these polycarbonate lenses. I looked through them, and they seem to have a weird look. Like Bobby said it takes a second to focus. Thanks- Christy
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cruzandfamily
21 posts
Sep 16, 2008
9:49 AM
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Bobby had surgery yesterday. The doc injected the dye, and said it was worse than what they thought. We go back for a checkup Oct 2, but he will have to have another surgery in a month. He showed me pictures with a lot of what I think was fluid. He said it's swollen. He is doing great though. :) My other question is these polycarbonate lenses. I looked through them, and they seem to have a weird look. Like Bobby said it takes a second to focus. Thanks- Christy
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cruzandfamily
22 posts
Sep 16, 2008
9:49 AM
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Bobby had surgery yesterday. The doc injected the dye, and said it was worse than what they thought. We go back for a checkup Oct 2, but he will have to have another surgery in a month. He showed me pictures with a lot of what I think was fluid. He said it's swollen. He is doing great though. :) My other question is these polycarbonate lenses. I looked through them, and they seem to have a weird look. Like Bobby said it takes a second to focus. Thanks- Christy
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cruzandfamily
26 posts
Oct 04, 2008
7:41 PM
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Bobby had his post surgery check up on October 2. The doc said he will still need to have several more surgeries to stop the leakage. I asked him about Vitrectomy (sp?). I only asked after reading about it in here. From what I gathered that would be a last resort type of thing. As long as he is responding to the Avastin and cryotherapy, then we will stick with it. I also asked about scar tissue. The doc said with any surgery there will be the scar tissue, but where the scar tissue is...it's a non-functioning part of the retina. Or something along those lines. I try to take notes, but he talks faster than my hands write. Next surgery is October 13. I did ask Bobby if the surgeries bother him. He said the only things are: when he goes to sleep and wakes up. Says there is a nasty taste in his mouth. He also said there is some pain from the eye clamp, but goes away quickly. This is when I want to grab him and hold on tight. But, a 13 year old boy doesn't want his mom loving on him (I get what I can though when he wakes up from the anesthesia. He doesn't remember me loving on him!).
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