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September 25, 2012 at 12:23 am in reply to: Do EDS and Marfan's effect the eye in the same way? #2962Wacky?isaParticipant
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.
LisaWacky?isaParticipantHi,
Well, I oopsed my dose got tripled, not doubled.
I do seem to have some mast cell issues but can’t find a doc to specifically address them. Claritin, Pepsid, and Benadryl are my current med based tools for that.
I guess I’ll have to re-check the list of foods that are high in histamine and do what I can within our limits. High K, low histamine foods we can affird…good thing I’ve pretty much given up enjoying food. 🙂
I actually don’t remember the side effects being as bad on Diamox as they are on Neptazane now that you mention it. But, at 300 mg a day I’ll be happy just to dodge kidney stones.
On going from 100 mg to 200 mg I had the best 36 hours I’ve had in months so there’s real hope that once insurance is worked out I’ll be functioning better even if I want to puke the whole time. :).
My goal at the moment is to make the most of the productive time Neptazane gives me because I don’t know how much longer I’ll be able to get scripts for it.
Thanks for replying.
Lisa
edit: is this the best list of histamine containing foods? http://www.chronichives.com/pages/lowhistamine.htm#allowedrestricted. Is ther anything not on it you’d add? -
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