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Chiari malformation

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  • Chiari malformation

    Anyone have it? Im heading to the mayfield clinic and hopefully ill have surgery soon
    MIDWAY SOCCER 08' First Season!!!!!!

  • #2
    They suspected I might have it but tests showed that I did not. I hear the surgery isn't an easy one but makes a world of difference in quality of life. Jingles for a complete recovery.
    McDowell Racing Stables

    Home Away From Home

    Comment

    • Original Poster

      #3
      The sound of the surgery makes me cringe but not sleeping, tingling, migraines, forgetfullness, sore neck and the other 30 or so symptoms I have make me want the surgery. Id like to enjoy my horse again, I havent really rode in a year and I finally have my horse love of my life
      MIDWAY SOCCER 08' First Season!!!!!!

      Comment


      • #4
        It can lead to being wheelchair bound so you are wise to fix it now. I have no doubts that it will be well worth it.
        McDowell Racing Stables

        Home Away From Home

        Comment

        • Original Poster

          #5
          I know.. I have declined in a yr I went from pro soccer fit to not being able to ride plus im exhausted. Im ready, beyond ready
          MIDWAY SOCCER 08' First Season!!!!!!

          Comment


          • #6
            I have low lying cerebellum tonsils that were determined not to be Chiari but it pretty much acts the same way. I ended up sending my horses away to my best friend's place because of my decline.

            I now have to figure out when to fit tethered cord surgery in my schedule. Because of my connective tissue disorder I know MANY people who have Chiari and have been decompressed. Just a quick question first because it's relevant. Can you do any of this stuff: http://www.hypermobility.org/beighton.php This is the first basic screening tool for Ehlers Danlos Syndrome and if you have it your surgery needs to be done by someone with that experience. There are 4 in the country I am aware of. Anyway, I ask because 1 out of 15 EDSers have Chiari. Better to figure this out before complications from surgery or a failed surgery.
            "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


            • #7
              There is a piece in this weeks COTH on this condition

              Or rather a rider who developed it in her teens.

              Her surgery was successful and worth it.

              Good luck. I can't imagine anything so frightening.

              I have killer migrains, but nothing like this is described.

              good luck

              Comment

              • Original Poster

                #8
                I'm not riding at all right now but hopefully after my surgery I Will be! That's my goal anyway
                MIDWAY SOCCER 08' First Season!!!!!!

                Comment


                • #9
                  Though I don't usually participate in threads, since I'm familiar with how lonely a road it can be, I wanted to pop in to share this site, which comes recommended through familial experience.

                  Best wishes,
                  Mod 1

                  Comment

                  • Original Poster

                    #10
                    My horse leaves tomorrow.. :/ now to get it all fixed. On a plus side meeting Chiari riders gives me hope
                    MIDWAY SOCCER 08' First Season!!!!!!

                    Comment


                    • #11
                      Good luck, elmerandharriet. One of my employees had surgery for her Chiari malformation just over three weeks ago. She had been in a minor car accident in December, and had some neck pain and tingling in her arm. Wound up getting an MRI, and she discovered that the pain and tingling wasn't from the accident, but instead from the Chiari. She had the surgery, which turned out well. The surgery was on a Wed, and was home by Friday. She was even "kind" enough to text me pictures of her incision the day after her surgery (I can't handle medical issues/bodily fluids!).

                      Overall she has been doing well. She isn't progressing as quickly as she thought she would, though it is still along her doctors timeline - he told her she would be out of work for 12 weeks. She is up and walking around, but a walk around the block will wipe her out. Her doctor said her goal is to be able to walk two miles, and she was getting discouraged because she is still a long way from that - but she is still fairly early on in the recovery process. She said she was still having headaches, but they weren't in the same area as before, and her doctor said they should be subsiding within the next week. So she's having up and down days, but more up than down. I think because she felt better than she expected coming right of the surgery, she thought the recovery process would be faster.

                      Best wishes to you for a full recovery!

                      Comment

                      • Original Poster

                        #12
                        That's encouraging!!!!!! Here lately my head has hurt so bad that when I touch it my vision blurs. I have set goals for riding like I hope to be riding hopefully around the 1 year mark and going to camp is my only goal for next year.

                        How much hair did they shave? Pathetic I know, but I'm curious if ill have to rock the gi Jane look. My doctor hasn't said how much he will shave lol.

                        I'm ready for some sort of normality this last year has been rough. I was hit by a car cycling and was diagnosed with Chiari.
                        MIDWAY SOCCER 08' First Season!!!!!!

                        Comment


                        • #13
                          LOL! Her hair was the thing she was most worried about! I just looked at the picture again. It looks like it's probably 2.5 x 2 inches that was shaved, and the incision was about 4 inches long. I know it wasn't as much as she was afraid it might be.

                          There are a couple of blogs on-line from folks who have had this disorder and surgery. I'd never heard of it before, and was reading up on it to get a better understanding of what she was going through. I don't know if you have looked at any, but if you google chiari malformation blogs, you'll find them.

                          ETA: How big is your protrusion? I believe her's was 12 cm
                          Last edited by nevertoolate; Mar. 25, 2012, 11:00 PM. Reason: another question

                          Comment

                          • Original Poster

                            #14
                            Mines only 7mm but for some reason my symptoms have just gone crazy. The not being able to smell, ear infections, ringing in the ears, and my least favorite feeling of bugs crawling.. I have like 35 symptoms that come and go.
                            MIDWAY SOCCER 08' First Season!!!!!!

                            Comment


                            • #15
                              No advice. Just wanted to say good luck with the surgery. Looking forward to post-op pics of you back riding.

                              Comment

                              • Original Poster

                                #16
                                It will be a long road back and it will take a special horse for me to ride but ill get there eventually
                                MIDWAY SOCCER 08' First Season!!!!!!

                                Comment


                                • #17
                                  Just saw this. I work a number of Chiari patients and wanted to jingle for a smooth surgery and fast healing! And, definitely post-op riding pics!
                                  Flip a coin. It's not what side lands that matters, but what side you were hoping for when the coin was still in the air.

                                  You call it boxed wine. I call it carboardeaux.

                                  Comment

                                  • Original Poster

                                    #18
                                    I'm getting mixed reviews on riding.. anyone have it and ride? Should I not jump lol
                                    MIDWAY SOCCER 08' First Season!!!!!!

                                    Comment


                                    • #19
                                      Just got your PM and saw this thread. I did have the surgery in October 2010. I am riding again although not jumping. I'm not sure who would kill me first, my neurosurgeon or my mother - probably my mother!! The surgery went well - malformation corrected and syrinx (cyst in my spine) that had developed from the chiari dissipated although it did leave me with a multitude of spinal degenerative issues. Riding my horse has become my therapy. Although my back hurts constantly (time to start P/T) - when I ride, I feel great. Feel free to ask me any questions - happy to answer having been through the whole ordeal!
                                      http://www.backontrackdocumentary.com/albie/

                                      Comment


                                      • #20
                                        Good luck - I don't have it but still have psuedotumor and I know that is a pain! Wishing you a speedy recovery!
                                        http://jconnors1982.blogspot.com

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