My son has Marfans Syndrome, we had to take him to the eye dr today and found that his right lens has detached 50%. His eye dr is concerned due to the marfans and the rate of retinal detachments that occur but the dr he refered us to does not seem that concerned.... I am a little uneasy and my gut tells me there is a little more to worry about than possible surgery in the next month or two.... Can anyone guide me,,, is a lens detachment that common and is it not something that needs to be taken care of immediately?
The biggest risk here is lens dislocation, which would require lensectomy and probably a new intraocular lens of some sort. At present it looks like he is headed in that direction. This is what often happens in marfan's syndrome which is a dominant trait as you know. This can be dealt with. We have amazing technology - just make sure you have an awesome doctor. The retinal detachment risk is real but less than the dislocation. I wouldn't worry about that so much. Take one thing at a time and make sure he has a heart evaluation with a cardiologist.
I'm not familiar w/lens detachment. However, if the lens is dislocated it maybe removed and IOL may be implanted or the eye could be left aphakic.Maybe JodieJ a great informed member of this community can respond w/ some suggestions.
However, your son is at greater risk of developing retinal detachments due to the Marfan's. To my knowledge and research of the medical literature the success rates of retinal detachment surgery is the same in patients w/Marfan's and without.
Andrew had mitral and aortic valve replacement surgery 2 years ago, he also had rods in his back at age 9.
I am courious, are they not able to reattach his lense? Would that not work? I am also having trouble finding a good eye dr. not many drs I have run into in my hospital travels know enough about Marfans. Is this something that would need to be done ASAP or would is it able to wait 2-3 months? What type of replacement options are there and what has worked in Marfans patients?
You can either place the lens in the anterior chamber, suture it in the cilliary sulcus, or go aphakic and wear a contact. The contact lens may be the best option for new if he is young like 16-20 years old. A sutured in implant might wear out in 30 years or so possibly. The life of an anterior chamber implant may be 30 years or so also. Might consider going as long as possible with contact, then getting a lens implant when older - maybe 50 or so. Just a thought.
We went to the dr who is going to do the surgery. He stated that due to the Marfans his eyes are not strong enough to hold the sutures and that he would have to graft his eyes to hold the stitches. Where do the grafts come from? He said he would use his own tissue for the graft but I forgot to ask where the graft comes from.
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