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Hi,
To simplify a long convoluted story as much as I can…
If a glaucoma specalist has experience operating on people with Marfan’s will this translate to a patient with EDS?
Thanks,
LisaHi,
To simplify a long convoluted story as much as I can…
If a glaucoma specalist has experience operating on people with Marfan’s will this translate to a patient with EDS?
Thanks,
LisaHi Lisa, I wonder what type of surgery you are referring to? Most Marfans specialists are used to subluxated lenses — something us “regular” EDSers don’t tend to get. Depending on the surgery (for glaucoma, I presume? is it a trabeculectomy?), can you mention to them that they may want to consider mitomycin C to prevent too much scarring (common in many of us). And of course, please tell them we take longer to heal. Oh, Heavens, don’t forget that WE NEED MORE ANESTHESIA. 🙂 Lots. Are you doing OK, Hon? 🙂 Diana
Hi, thanks for the reply. With all the stress I forgot to add more info.
The procedure I need is a shunt. What type has yet to be determined but thanks to 300mg of Naptazane a day I can put it off for some time.
My trab has failed post cataract surgery so this is my best option.
As an aside I want to put it off for as long as possible because if the shunt does enough I will no longer have an ‘easy’ reason to be on the Neptazane.
I got a 2nd opinion with Dr Robert C Urban who says that not enough is known at this point to know if his experience with people with Marfan’s or my HMO approved ophthalmologist’s experience with people with Marfan’s will translate into my operation. However, he’s fairly confident that the shunt can be installed when the time comes.
The information on limiting scarring should be helpful. Although I’ve had remarkably few operations for someone with Congenital Glaucoma (7) my scar tissue may be vecoming problematic in and of itself.
No matter what, I’ll get through this. As a kid I didn’t expect to be able to see into my 30’s so the years past 30 have been a bonus.
LisaYes, Wacky, you WILL get through this! I think the mytomycin-C discussion is an important one, to prevent scarring. Although eye docs often use it for trab surgery (I love that you knew what to call it!), it may be something they haven’t considered for shunting, but maybe they should, certainly for EDS.
Hon, I have a special interest in helping you because I have a relative with very similar issues (hers started at about 18 months of age). I know how hard it can be, especially if the docs don’t understand what you have to go through medically and psychologically. You are SO STRONG, though. Don’t forget that, OK? You are not alone… Big hug, 🙂 DianaHi,
To simplify a long convoluted story as much as I can…
If a glaucoma specalist has experience operating on people with Marfan’s will this translate to a patient with EDS?
Thanks,
LisaHi Lisa, I wonder what type of surgery you are referring to? Most Marfans specialists are used to subluxated lenses — something us “regular” EDSers don’t tend to get. Depending on the surgery (for glaucoma, I presume? is it a trabeculectomy?), can you mention to them that they may want to consider mitomycin C to prevent too much scarring (common in many of us). And of course, please tell them we take longer to heal. Oh, Heavens, don’t forget that WE NEED MORE ANESTHESIA. 🙂 Lots. Are you doing OK, Hon? 🙂 Diana
That’s interesting. I am hypersensitive to all drugs and need so much less than normal. If I have a normal amount of anesthesia they have a hard time waking me up.
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