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

  1. #1
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    Default I'd cry but that would only make me feel worse!


    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.

  2. #2
    Distinguished Community Member Jo6's Avatar
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    Default Hello Tiffany

    Welcome to Brain Talk. I am so sorry for the pain you are in. I do not know much about your particular problem, but I'm sure someone here at BT will see your post and try to share with you.

    It sounds like you have one of those Drs. that has a God-complex. If you don't feel exactly as they say you will after they do surgery they just want to discard you. Between my husband and myself we have both had Drs. like that and it's hard to find good Drs.

    Is there any way you can get an appointment sooner than Nov.? That is awful to have to wait so long with you in that much pain. I am somewhat formuluar with the different hospital's in the Atlanta area, but no personal knowledge of any.
    My son and his family live there and my granddaughter has been under one Dr. or another for several years. I'm not sure, but I think Emory Hospital is a teaching hospital and although I consider the teaching hospital's some of the best they do tend to leave too much for the "almost Drs."

    Maybe try to get a Dr. to refer one that can do surgery. It sounds like something did not go as it should according to the Dr.'s actions. I do wish you the best and hope someone will stop by and help you out.

    Anytime you just need to rant and rave, please feel free to do so. Many of us do that here. I have been a member at Brain Talk since 1999, and I was good friends with a girl that had what you have.

    It's been a long time since I've seen her, but I'm sure others here know more than I do. I invite you to visit the Emotional Support Forum here. Everybody there has different problems, but many times that is where you find those few that have the same problems.

    Come by and visit and rant and rave there, we all do that when the forums that could help is slow. We would love to have you join in.

    I'm glad you came and hope you decide there is help for you and maybe find out where you can find it.

    Best wishes to you and your husband. It is great he is on your side, that is a great help to have family understand the pain you are in.

    I'm glad I saw your post. Keep posting, someone will see sooner or later. Hopefully sooner.

    to you both, Jo
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

  3. #3
    Distinguished Community Member Barque's Avatar
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    Unhappy

    I agree, something is very wrong. Either with your diagnosis or the procedure OR your doctor. I know getting a 2nd or even 3rd or 4th opinion at this point is a daunting task but may be your only options Tiffany. Doing online research on your symptoms before the surgery too may shed new light somewhere.

    I get it too about doctors that do a surgery then just abandon you, I HAVE one of those. Just wanted the money then Bye Bye SUCKER! And they all back each other up too. We get royally screwed. :ambivalence:

    I know about the bending over stuff. I have that issue too.
    Last edited by Barque; 03-08-2012 at 06:02 PM.

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    Red face

    Jo and Barque thank you both so much for your response.
    I regret having this surgery so quickly after my diagnosis, we felt pressured to get it done asap because my n.s. said that I could die in my sleep.
    Well that scared me and hubby to death so I was having surgery two days later without even going to another dr.
    I suppose you just have to learn as you go, and I have done ALOT of research since my surgery.
    I have been blessed with excellent health prior to this and I suppose because of that we were somewhat disallusioned about dr.s. Silly me I thought they would care for me and I believed what they said!
    I do believe, from what I have learned, that my shunt has failed.
    My dr. tapped the shunt in dec. To check the csf, and pressure. Both he said were fine at the time but I still have doubts since there is no improvement at all.
    Jo thank you so much for your kind invite to the other forum, I will look into it. I am just hoping someone with similar issues will see this.
    I send you both good wishes, and thank you again

  5. #5
    Distinguished Community Member Barque's Avatar
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    Angry

    People need to be aware of doctors and their "Scare Tactics". One reason I HATE going to the doctors. The more procedures they talk you into the more money they make. It's not about YOU, it's all about THEM! Same goes for hospital stays, I hate them too.

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    Distinguished Community Member Ging's Avatar
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    Default

    Hello tiffiany, all that has been said above is right . Surgeons(cutters) sometimes do have God complexes and they don't get to know you or your concerns, Emory is one of the best hospitals in Atlanta, I have been there with family many times and My sister in law had brain surgery there last year, this doctors sounds like he is all about him! May I ask about the keppera(spelling) were you having seizures? ..I don't know anything about your condictions but my niece has a shunt and has hydro. she has had since birth. I hope some one with more information can answer you , but know this , we all have something in common and that is the emotional stress that we all go through with our indiviual situations, sorry about the spelling...I am still loopy from my angio.
    welcome to brain talk there are so many good people here and they offer support , they will cry with you.. scream with you and just be with you. Hugs, ging ;)

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    [ FONT=Book Antiqua][/FONT]ging....thank you so much for your reply.
    The keppra was perscribed from the neurologist to try to relieve the headaches, he thinks they are deep tissue spasms from having so much pressure in my head. But I have been on it for awhile with no relief.
    I am so upset! Yesterday I started throwing up, I'm not sick, so I call my n.s and he doesn't call me back but has his intern call me to tell me they think they need to take the shunt out since I'm not feeling better! Oh my goodness that just contridicts everything theyhave told me for the past 6 months!
    I am just at my end, I can't function like this anymore and I just want to find a dr. that will work WITH me. I called emory and asked to be put on their cancellation list, hoping to get in sooner.
    I told hubby that I refuse to let current dr. cut on me again.

  8. #8
    Distinguished Community Member Barque's Avatar
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    Thumbs up

    One word comes to mind, Malpractice.

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    Default

    tiffandco I understand your plight. I was just like you. After getting my first VP at age 41 I would up in constant non-stop never ending pain.
    I have been operated on by 3 neurosurgeons looking for some relief. I have also been to numerous neurologists and found one in Maitland Florida
    who has been the opposite of what many people feel about them. He was a major help.
    No even after 15 years of searching for some relief I still lead a life with 24 hour a day pain in my head.
    I have come to except my condition and do not fret over it. I didn't say I'm happy but I at least have enough meds to temper the pain.
    My latest neurologist back here in NY has tried to help but even she now realizes I will never be free from this pain.
    OH and after the first three neurosurgeons who operated on me in NY and have no idea as to what to do. I have been to 4 other neurosurgeons down in
    central Florida who have no ideas on what else to do for me.

    You might have to become like me and just except your fate. I look at it this way. I can still get up and move about.
    I do have my days where I would like my own private rubber lined room though.
    I have also been lucky. Even though all 3 neurosurgeons became total stumped I have no complaints about any of them.
    Of the ones in Florida, only one of them would I say stay away from.
    I was turned down by 4 or 5 other large neurosurgery groups in Central Florida after they received copies of my medical records from NY.
    The neurologist down in Maitland Florida suggested a particular neurosurgery group he knows very well.
    I told me they already turned me down.
    I am a awful case, I understand that. But I am an easy patient because I'm not a whiner.
    So long as I get the drugs I need to temper the 24 hour a day pain in my head (15 years so far) I'm doing OK.
    Hopefully you will get to this stage also.
    George

  10. #10
    Distinguished Community Member Barque's Avatar
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    Angry

    Quote Originally Posted by tiffandco View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ging....thank you so much for your reply.
    The keppra was perscribed from the neurologist to try to relieve the headaches, he thinks they are deep tissue spasms from having so much pressure in my head. But I have been on it for awhile with no relief.
    I am so upset! Yesterday I started throwing up, I'm not sick, so I call my n.s and he doesn't call me back but has his intern call me to tell me they think they need to take the shunt out since I'm not feeling better! Oh my goodness that just contridicts everything theyhave told me for the past 6 months!
    I am just at my end, I can't function like this anymore and I just want to find a dr. that will work WITH me. I called emory and asked to be put on their cancellation list, hoping to get in sooner.
    I told hubby that I refuse to let current dr. cut on me again.
    I don't blame you one bit. How can you trust someone that has screwed up so badly with you? I certainly couldn't.
    Last edited by Barque; 03-12-2012 at 05:39 PM.

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