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I'd cry but that would only make me feel worse!

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    Hi maybe I can help

    Originally posted by tiffandco View Post

    Hello, first let me say this place is fantastic and a welcomed find for someone who feels so isolated! My name is Tiffany and I was diagnosed with hydro last Sept. after 3 months of the worst headache I have ever had! In Oct. I recieved a medtronic strata shunt and since then I have tried every setting, several medications and still feel as bad, if not worse somedays, since before my surgery. I have poor memory, wake up with a pounding headache every morning, and if I try to bend down, to pick something up ect., myhead feels like it is going to explode! (My n.s. said that doesn't make sense to him since it should be relieving pressure...idk) I don't want to appear as a whiner but my life has STOPPED I can't enjoy my families activities, I rely on them to help me with everything and most days I am doing good just to be up and out of bed. I was told by my dr. that I would see a dramatic improvement after surgery and I havent. I was told by same dr. to go to a neurologist to see if they could help, after 3 months on keppra with no help he is now sending me back to my neurosurgeon. This surgeon does not communicate well with me, and often changes his story, he no longer sees me when I make an appt. but instead lets his intern deal with me. I don't know why he doesn't care for me. I am not a difficult or demanding person but I have not had any relief in pain, confusion, or worry. I have an appt. with a neurosurgeon at emory but that isn't until next nov. I don't mean to rant, I just hope maybe someone can give me some advice in dealing with this condition, and with dr.s that don't listen or believe in my pain. My husband goes to every appt. with me, for support and he also has become my lifesaver in remembering what the dr.s say. Any advice and encouragement will be so welcomed, as I am frustrated beyond words as I am sure many of you understand.
    Hi. I've had hydro for 47 years. Maybe if we talk we can take a look at your patterns /settings and figure out an approach for doctor will understand in relation to what's happening.


      ((((((Claude Raines)))))) ~

      to BrainTalk!

      We're glad that you found us! How caring and supportive of you to offer your 47 years of experience and knowledge with Tiffany. Unfortunately, this thread is a little over 4 years old, and Tiffany hasn't returned since she posted the thread. And sadly, this forum isn't as active as it once was.

      Perhaps you can start a trend by posting a new thread sharing your insight, and old members will return and new ones will join.

      Love & Light,

      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.