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Chiari malformation

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  • Original Poster

    #21
    I just want some sort of normality back.. I really miss my horse first and foremost
    MIDWAY SOCCER 08' First Season!!!!!!

    Comment


    • #22
      Originally posted by jconnors View Post
      Good luck - I don't have it but still have psuedotumor and I know that is a pain! Wishing you a speedy recovery!
      I have developed this now after my Chiari - taking Zonegran to try and deal with it - what do you do?
      http://www.backontrackdocumentary.com/albie/

      Comment


      • #23
        I take Diamox for intercranial hypertension.
        "You are a child of the universe, no less than the trees and the stars;
        you have a right to be here." ~ Desiderata by Max Ehrmann

        Comment

        • Original Poster

          #24
          What do y'all take for sleep?
          MIDWAY SOCCER 08' First Season!!!!!!

          Comment


          • #25
            A hot bath with Epsom salts. If its a BAD night I take a hydrocodone too. Pain control is more important per a top sleep doctor when he spoke last year at the Ehlers Danlos conference. This was for people with chronic pain. Not sure it translates to everyone. Before diagnosis I used to take Tylenol PM. 1 a night, not 2.
            "You are a child of the universe, no less than the trees and the stars;
            you have a right to be here." ~ Desiderata by Max Ehrmann

            Comment

            • Original Poster

              #26
              There's days when its not always pain keeping me up some days my brain wont shut off but I'm exhausted. Last night i was asleep about 1:30, the night before it was 4:30 up at 7 aa few normal days of sleep I was up Sunday night through Tuesday at about 2:30
              MIDWAY SOCCER 08' First Season!!!!!!

              Comment


              • #27
                Hey, E&H, just an update on the woman I work with who had surgery for her chiari...she came back to work this past week, four weeks earlier originally planned. She said it was tough going the first couple of weeks, but she feels so much better now than she did prior to the surgery. Hope things improve for you too!!

                Comment

                • Original Poster

                  #28
                  Wow that's awesome! I don't plan on rushing back to work since I'm a farm manager but I'm also looking at different management jobs so tbh no big rus. Glad she's feeling better!!
                  MIDWAY SOCCER 08' First Season!!!!!!

                  Comment

                  • Original Poster

                    #29
                    Any Other Chiarians out there?
                    MIDWAY SOCCER 08' First Season!!!!!!

                    Comment


                    • #30
                      I had the surgery 2/18. I was off that week, worked from home for 3 weeks (wasn't allowed in the car) and went back to work at the one month mark. I have a marketing desk job.

                      I was allowed to ride at the walk at 60 days, trot at 90.

                      Comment

                      • Original Poster

                        #31
                        That's so helpful! I'm considering surgery first of the year
                        MIDWAY SOCCER 08' First Season!!!!!!

                        Comment


                        • #32
                          OP, I had Chiari decompression surgery in 2004. I see that you are located in Ohio, may I ask which doctor you are using? I went with Dr. Kosnik at Children's Hospital. Please PM me if you have any questions or need someone to talk to.

                          Comment

                          • Original Poster

                            #33
                            Are you going to the CSF Chiari walk in Columbus? I'm going and yes I'm still searching for a surgeon! Ill pm u and chat chiari when I'm not on my phone
                            MIDWAY SOCCER 08' First Season!!!!!!

                            Comment


                            • #34
                              Take a look--Taylor Flury had Chiari surgery and is now back competing at a high level in show jumping. http://www.chronofhorse.com/article/...ple-role-model

                              She also blogs for the Chronicle... http://www.chronofhorse.com/category...e/taylor-flury

                              Comment


                              • #35
                                Originally posted by elmerandharriet View Post
                                Are you going to the CSF Chiari walk in Columbus? I'm going and yes I'm still searching for a surgeon! Ill pm u and chat chiari when I'm not on my phone
                                I haven't heard of the walk, I'll look into it! Also, this would be quite weird...but did you go to Midway College in KY? Because I went there too, and that would just be a mighty coincidence.

                                Comment


                                • #36
                                  Dr. Bolognese at The Chiari Institute on Long Island is fantastic And has a new, even more minimally invasive procedure for skull-c2 fusion and chiari decompression.

                                  Dr. Fraser Henderson in Maryland is also excellent and VERY experienced as well.

                                  I have a friend who had C2-skull fusion and chiari surgery by Dr. B. She is doing very very well. She has never felt better in fact. There have been small blips along the way but she, like me, has other complicating conditions. She was bed bound befire surgery in her early 20s. Post surgery she has been out walking several miles a day and is back in college taking classes!

                                  The best advice I can give is find an EXPERT even if you have to travel. There is a world of differwnce between a neurosurgeon who does a few of these surgwries a year and a soctor who has done hundreds a year for many, many years.
                                  "You are a child of the universe, no less than the trees and the stars;
                                  you have a right to be here." ~ Desiderata by Max Ehrmann

                                  Comment

                                  • Original Poster

                                    #37
                                    I am just afraid of riding at this point with the fear of a TC I am afraid something bad could happen
                                    MIDWAY SOCCER 08' First Season!!!!!!

                                    Comment


                                    • #38
                                      Just as an FYI, my doctor allowed me to ride on the flat until I had the surgery, but no jumping, he felt it was too risky. I began riding again about two weeks after the surgery, jumping was cleared as well at that time.

                                      Comment

                                      • Original Poster

                                        #39
                                        I am just worried about the possible TC I am still thinking I will ride just not as much until I see Dr Henderson, I wish I was brave enough a few years ago to go see him (well last year) oh and yes I did go to Midway lol I dropped out after I got hit by a car and became symptomatic I needed to go home and get help but it seems to only be getting worse and Cleveland jerked me around for so long. I finally realized they wont help me and I am seeking help from someone who will take me seriously
                                        MIDWAY SOCCER 08' First Season!!!!!!

                                        Comment


                                        • #40
                                          Holy cow! Are we the same person?? I got rear-ended by a car the day before I went to Midway for my freshman year. I became super symptomatic and could barely get out of bed, I was going to physical therapy, chiro, massage therapists, until finally someone figured out my MRI looked a little off and decided to investigate. I transferred to OSU after having the surgery and needing time to recover and get my life back.

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