I understand that this site is for information for parents but my husband was just rescently (7months ago) diagnosed with stage 3 Coats disease and isn't responding to treatment. I don't know where else to turn to in order to get questions answered and/or help. If this isn't the place please help direct me to somewhere...Information on this disease is so limited and I don't want to get into a ton of stuff and clutter up your space without this being the correct forum...but I can't find an adult forum/site/support network.
I am not sure what part of the country you live in. From our experience your husband's treatment options are critical at this point to save the vision in his eye. Since treating Coats' is such a micro-specialty I would not hesitate to travel to a facility that has significant experience treating this disease. We live in Connecticut and our surgeon in CT sent us directly to Philadelphia, PA. Initially we thought we would receive treatment at Yale New Haven, New York City, or Boston, but they recommended Wills Eye in Philadelphia because of the many patients they have treated with Coats' for many years. There are other fine hospitals that many families travel to throughout the country as well. Unfortunatley for many of our children we were diagnosed later and the goal was to save the eye. Please feel free to ask any questions you may have. There is a wealth of information and great people on this site. If you would like to discuss this further you could forward your email address and I would be happy to send my telephone number.
I live in Michigan and we have been going to U of M. They have been working on his eye for 6 months and he already has had 2 surgeries and is on his way to a third. He doesn't want to go into stage 4 where we have heard that it means constant pain??!!?? But we don't know the options if it doesn't respond to treatment. His first surgery was some sort of cryo-therapy. It wasn't successful so he had an Avastin injection about 4 months ago. That worked ok but then he had a total retinal detachment so he had a surgery called a Vatrectomy and some sort of buckle to attach the retina...and at his 6 week followup they said the Coats Disease was acting up agin.
We just don't know where to take this or how many options we have left and I don't want him in pain and we have an infant son and need his income and so I just don't know where to turn. I will never ever say it's time to stop fighting because it's his eye and his choice but (and this will never go to him but I need help dealing with this I'm so sorry I don't mean to sound mean), when do we stop fighting? I mean...it's only in one eye...can a person function? Can they do their daily activities? Can they get to work? I don't want him to be in pain...how much time does he have before there is no hope?
I know that sounds selfish to those of you who are dealign with this in your children and have been for such a long time. I don't mean to minimize any of that or say that 6 months is such a LOOONNNGG time or anything...I just don't know what I'm feeling right now and this is very confusing. And everyone acts like we should not be so upset because it's "only one eye" and "It's not like he will lose sight in both of them". I
I should end this as it's getting into Rant vs. Questioning and I don't want to minimize anyone elses pain. I just feel like we don't have time to grieve (does that sound stupid?) and my emotions are all messed up.
Hiya, please do not worry, its understanding that you are worried about your husband, I would be too!Who told you that stage 4 means constant pain?I never heard that.The pain is supposed to be there only if glaucoma appears.That's what we were told with our son.If he gets pain, than he needs treatment, otherwise he should really not do much even though if its in active stage.At the end of the day its just a colesterol building in the eye and yes, he is loosing sight in that eye, but he got the other one!Loads of surgeries will bring him more pain than he is in and would be in if nothing is done.I know it sounds crazy, but in a way it is logical.Was your husband in pain before he undergone 1st surgery?Our son is 3 and almost lost sight in his left eye,he is aware of his 'broken' eye, but as long as he isn't pain, we wont take him for surgeries as no surgery will bring his sight back and if so only for few months.We do thank god it's not retinoblastoma and want to keep him stable for as long as we can.Take care,respond as soon as you can, I want to know about you! The other things is- apparently the adult form of Coat's is much much milder form than the one in children, so I think your husband WILL get through it.
Randi, I just wanted to follow up on what karlperkins said, and that is that stage 4 does not mean "constant pain". Our Jacob has been in stage 4 for 4 years. He has never been in pain, other than after his laser surgeries. You want to keep track of what the Intraocular Pressure (IOP) is, and you should begin to worry if it goes much over 20. When they did the vitrectomy, did they indicate whether they replaced the vitreous with saline or silicon oil? The Avastin injections may take a while to stop the leakage, I wouldn't give up on them after 1 or 2 injections. You also may want to talk to your doctor about Lucentis injections, too. Different drug, pretty much the same concept, though. Most of all, please remember to protect the non-Coats' eye with polycarbonate lenses.
Hi. I live in Northerm MI, and drive to Grand Rapids twice a month for my 13 year olds visits. I looked at U of M, but Grand Rapids is only a three hour drive compared to a 4 1/2 hour drive. They are both great places with great doctors. Every month Bobby will receive crytherapy and Avastin injections for at least three more months.
When I found out my son had Coats, I was heartbroken You have every right to feel the way you feel. I was angry, then cried all the time, then angry, and so on. I will say the pain has subsided. I thank God every day I have my son. It's hard, but we need to stay positive.
As far as him functioning...he will adapt to single vision if it comes to that. He can still drive. What is your husband's occupation?
It will get better. I promise. Take notes. Ask questions. Start a binder with all the information you receive from the doctors. Read all the posts on this site. There is a lot of information, and you will see you are not alone.
I live in Manchester England. I lost my left eye to Coats when i was 24. I am now 54 and live a perfectly normal life, including driving around 18,000 miles each year. I have never experienced pain apart from headaches that led to the diagnosis of Coats. Since the eye was lost i have had no pain. It is a worrying time when you get the news but keep positive folks and if sight is lost in one eye it is not the end of the world, you can and do adapt.
Thank you all so much for all your kind words. I'm sorry it took so long to reply but the days just seem to fly by now. Especially with the holidays here. I'm glad that he won't necessarially be in pain once he hits stage four, as we are pretty sure that is where this is going. He has the oil in his eye from the retinal re-attachment surgery so our understanding is that at this point the treatment for the Coats has to stop due to the potential of toxicity in the eye. At his visit today his pressure was 9 so that aspect at least is good. The Coats is still progressing but until they remove the oil we are just going to watch it, and we are going to remove the oil when the Coats starts to infringe on his center of Vision again. Right now it Vision remains stable.
He has already stated he isn't going to go to any more surgeries, but we were able to petition the insurance company to cover the Avastin injection and so we will probably get a few more of those if needed. Maybe once he has time to think he will re-consider the surgeries but I'll support him in whatever he decides.
I have some more questions but I'm going to read around and see if they haven't already been answered on the forums. If not I'll post again. Thank you so much for allowing me to be a part of this!
