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• Number of RS visits?
• Posted: 2007-08-21 09:52:20 By Mary S
• Hello folks.
  I was a bit curious about actual visits to the RS. As you see we all have slightly different vision Problems.
  
  So just to compare what each of us are doing, Please consider answering a few questions.
  
  How many of you go to see your RS every month, 3 months, 6 months, or one year?
  
  Are you receiving treatment?
  
  What is the treatment your receiving?
  
  How long have you been receiving this treatment?
  
  Has the treatment helped improve your vison?
  
  Has this treatment kept your vision stable. If so for how long has your vision been stable?
  
  Thanks for responding.
  mar
  

• Re: Number of RS visits?
• Posted: 2007-08-22 19:51:36 By Amy R
• Mary,
  I haven't started treatment yet (I gave the summary of my situation in a response to Cassandra) because I'm pregnant. However, I probably still see my RS once a month.
  I have also gone to Bascom Palmer to get their views as well as seen the head of the retinal department where my RS practices.
  How is your condition coming along? I just joined the group and see that you are a regular contributor.

• Re: Re: Number of RS visits?
• Posted: 2007-08-23 02:20:22 By Mary S
• Amy, I will have to look for your prior message,. I do not remember seeing it.
  
  When is your baby to be born?
  Congratz on the little one.
  
  I will be wishing you both the best.
  mar

• Re: Re: Re: Number of RS visits?
• Posted: 2007-08-23 12:11:24 By Amy R
• Hi Mary,
  I've just re-pasted my story here. When I was pregnant and had MMD I couldn't find a soul who was going through the same thing-- I hope that if there's anyone else out there searching that they can find my post!
  --I was diagnosed with Myopic Macular Degeneration when I was about 8 weeks pregnant. My vision in my left eye was going downhill FAST. The docs didn't want to treat it at all b/c of the pregnancy but we considered it. I ended up just taking shots of the steroid, Kenalog to try to slow the degeneration as much as possible and get through the pregnancy. The first shot was great and I actually saw some real improvement, (probably back to 20/30 where I started) the second shot held off the deterioration and the third shot didn't seem to do anything. So that's where I am now. 28 weeks pregnant and my left eye is deteriorating pretty rapidly. I was at ~20/100 4 weeks ago when I had the most recent steroid shot and now I'm at 20/400. At this point, I've decided to wait until I deliver and then will aggressively treat with Lucentis. I have seriously considered taking the Lucentis before delivering, seeing that I am in my 3rd trimester, and that so little of the drug makes it into your system, but because I have already missed the benefits of treating early I've decided (for now anyway) to wait. I have also decided to do an elective c-section. My docs feel that there is some increased risk that pushing could aggravate the condition. Also, and in my view, more importantly, my good eye - which has been holding strong at 20/30 --could be impacted. There are situations where people with healthy eyes damage their eyes during labor, and I can't take that risk. Furthermore, I believe that my good eye is at increased risk to have a problem- the retina is very stretched due to my severe myopia and has all sorts of cracks, etc. Right now, I'm just deciding when to have the c-section -- 37 weeks with amnio or 39 weeks and when and how long and when to breastfeed. My OB's initial reaction was that breastfeeding should be fine - and that injectable medications are usually thought to be fine during nursing because once the drug has gotten into the mothers milk and then the baby drinks and digests that milk, there would not be enough drug to cause harm. Especially with a drug that is primarily contained in the eye. I asked about breastfeeding for the first 3 weeks or so before the baby can produce its own antibodies and then stopping -- my OB said that would be pretty traumatic for both me and the baby... My RS seemed inclined to have me avoid breastfeeding rather than take Lucentis and breastfeed.
  --I'm due November 14th - a boy. I've made it so far and thank god I can still see. It was terrifying so early in pregnancy when I didn't know how bad things would get -- and whether my other eye might become affected.

• Re: Number of RS visits?
• Posted: 2007-09-23 07:47:52 By Ellyn S
• Hello Mary,
  
  I was seeing my RS every 6 months until a year ago when I began treatment first with Avastin and then with Lucentis. I now see him every 6 weeks.
  
  The treatment does not actually improve the vision, but I suppose it is preventing it from getting worse. Three years ago, before Lucentis, my vision went from 20/25 to 20/100 in a very short time and was helped with PDT. (My other eye is already at 20/400).
  
  Right now, the vision in the treating eye is holding at 20/30, but I do have a lot of distortion in the center, so it is not "clear" vision.
  
  Still, I am pleased with the results of the injections; but not the procedure itself.
  
  Ellyn from NY

• Re: Re: Number of RS visits?
• Posted: 2007-09-23 08:13:08 By Mary S
• Hello Ellyn,
  your quite an early bird.
  I am sorry that the treatments have not helped to improve your vision, but glad to hear that it has not gotten any worse for you.
  
  It sure will be nice if they come up with an eye drop that works just as well as the shots.
  
  My best to you.
  mar

• Re: Re: Re: Number of RS visits?
• Posted: 2007-11-09 17:32:52 By Debra U
• Two opthamologist that I saw independently told me to come back in a year. I'm going back in less than that. I don't have a blind spot, buthave lost central vision.One opthamologist is Univ of NC. I thought they would be pretty good but was disappointed. They recommended Icap vitamins, gave me a grid. My military ins pays for UNC but not duke.Duke might be better.

• Re: Number of RS visits?
• Posted: 2007-12-09 22:01:42 By albert g
• the left eye i have wetmd [ had six injections in 2006 avasdin the right eye is to bad blind spot the shoot have stablized the left eye i see my rs every 4 months