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This is a mailing list for those who suffer from PTC. Family members, friends and loved ones are not only welcome but encouraged to participate. This list is intended to offer support, help, a little levity and information sharing conerning this orphan disease. This list will be managed with love and compassion. Your diversities are not only recognized but celebrated. This list is owned and run by fellow sufferers. We laugh together, cry together, pray together and rejoice to gether when something finally does go right. You are welcome here and will be treated with respect and compassion at all times.
Hello everyone- Hope all is well with everybody. It has been a while since I have posted on here. I had a vp shunt revision done on January 20th 2009. In
Wow! It's really disheartening to hear so many issues with the shunts! I'm not the sufferer of PTC, but my best-friend is. She is allergic to sulfa, a main
I am taking Lamictal for seizures and my neuro said it is a good med, even in the long run. I also am on diamox, lasix and a eyedrop to help keep fluid out of
I implore all of you who may have had an abnormal MRV to seek an Interventional Neuro-radiologist to explore this further. We were told that our daughter's