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

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    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
    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.

    s 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

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      #3
      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, 05:02 PM.

      Comment


        #4
        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
        Attached Files

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          #5
          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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            #6
            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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              #7
              [ 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.

              Comment


                #8
                One word comes to mind, Malpractice.

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                  #9
                  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

                  Comment


                    #10
                    Originally posted by tiffandco View Post
                    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, 05:39 PM.

                    Comment


                      #11
                      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

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                        #12
                        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

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                          #13
                          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

                          Comment


                            #14
                            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!

                            Comment


                              #15
                              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.

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