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

  1. #11
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    okay, sounds like you need a new NS, but you have already established that.

    it sounds to me like you could be overdraining. does your shunt have an anti-syphon on it? I went through 4 different valves before we found one that worked for me. Not sure what hospital you are going to, but you can always try going to the ER and tell them you think you are in shunt failure. They will most likely do a CT, a shunt series, and a shunt tap.

    How were you diagnosed with hydro? Was a lumbar puncture done? Was it based off of a CT scan?

    Don't give up, keep trucking along and stand your ground.

    Suzie

  2. #12
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    George
    Did you ever contact Shands up here in Gainesville. It would be a 3 hour drive I think, but I am sure fresh eyes might help. If you consider coming, see if you can get to see Dr Kelly Foote.
    Suzie

  3. #13
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    Red face Tiffany, I'm so sorry, I didn't spot your post until, now!

    :( I was born with Hydro, so, I have a shunt, myself. I had my 1st shunt put in when I was a couple of
    months old. I had my 2nd revision when I was nine. I'm now, 45.
    I *strongly* agree with the others who've, said, you *need* to find other dr.'s!! I'm sorry, but, your
    Dr.'s don't know their a** from their elbows!!! You should *not* still be feeling so horrible!!!
    Please, please, shop around for better Dr.'s at a different place, if, you need to!!!
    I just want you to know, I understand, completely, how you can feel with a mal-functioning shunt.
    Please, continue searching for Dr.'s until, you find one who, truly, wants to help you! :)

    Phyllis

  4. #14
    Community Member dagaz's Avatar
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    Tiffany I'm going through much the same thing.. today the headache is off of the charts... after my dh got home from work he said press your shunt reservoir see how long it takes to refill.. 20mins later it finally refilled. My situation is a little different because I also have a cerebral spinal fluid leak... I know you wouldn't think it was possible to have both. We have to drive 5 hours tomorrow for a funeral I'm praying that my head ache doesn't return.. I was vomiting and all...not fun. I am going to get myself to my NS when we get back if things don't change...good luck...
    Brain/Pit tumor=17 brain surgeries 20year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, tension pneumatocele, ( air under the skull next to the brain), 2 craniofacial craniotomies, several shunt revisions, 7 bifrontal craniotomies ... Dag "If I started crying I wouldn't stop!

  5. #15
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    Hi Suzie, We moved back to NY. After seeing 7 neurosurgeons both in NY, where I have been operated on 16 times.
    And in the greater Orlando area there is nothing else to be done.
    When the pain gets so bad I can't stand it any longer I have Oxycodone.
    I do not take any pain meds on a continuous basis. I just live with the pain and have excepted that nothing else can be done.
    We tried Botox injections all around my head. $6,000.00! What a waste of money.
    Oxycodone with a glass of vodka and OJ still works the best.
    Grin and bear it I do.

    I miss living in Florida, well except for the humidity, I miss Seaworld, Bush Gardens, Downtown Disney and riding all the roller coasters.

  6. #16

    Default Hi maybe I can help

    Quote Originally Posted by tiffandco View Post
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    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.

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  8. #17
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((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,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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