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I have nerve damage. Update: Let me tell you me tale of woe #230

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  • GotGait, SO sorry you are going thru such a long and painful journey. I won't slip,any magic pain surges under your door but wonder if you have ever been evaluated for a connective tissue disorder like Ehlers Danlos Syndrome. The joint pain you describe is all too familiar to me. The pain, "injuries", and oddity of it all has me wondering if anybody ever evaluated you for it. Ironically, THE expert for EDS is in Greater Baltimore Med Center, Dr. Francomano. I am going to give you a link another top doc in the field wrote. It might be way off base but if it sounds familiar maybe asking one of your neuros for a consult would get you seen quicker by her. Hugs. I know how it is to miss the horses. Mine are 14 hours away in TN with my best friend. I keep waiting for the day. I can bring at least one home. One of them drives so I hold on to the hope of driving even if I am forbidden to ride like I am now.

    http://www.dynakids.org/Documents/hypermobility.pdf

    And a WONDERFUL book on severe pain management. http://pain-topics.org/pdf/IntractablePainSurvival.pdf
    "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

      Thanks for the links! My joint pain is pretty much gone now. It kind of came around the same time that they upped my pain medication to OxyContin. I must have finally gotten used to the dosage because my hands don't hurt anymore. I was managing the joint pain for awhile by playing guitar - just moving my fingers enough helped some. My hands were painful for quite awhile though.
      What I hate right now is having pain where there are no nerves left. Seriously body?!

      I hope you get to be with your horses soon. I would love to try driving, but there's no place to really do it around here except in our outdoor. I'd probably have to trailer somewhere.
      One of my Pasos was trained to drive and I have pics of her doing it, but I never had the equipment.
      You are what you dare.

      Comment


      • You are such a trooper and an inspiration to the rest of us. Lots of jingles for healing and no more pain!
        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

          Originally posted by jen-s View Post
          You are such a trooper and an inspiration to the rest of us. Lots of jingles for healing and no more pain!
          I realize that I'm very fortunate to live where I do. My one doctor is one of like five people who specializes in pelvic nerve pain. Originally, we thought we were going to have to travel to NY to see a doc up there. Traveling so far becomes this overwhelming task, and most people (myself included) I think would just give up and exist with pain. I *knew* that I would go all the way up there, be subjected to the same battery of tests (again) only to hear, yet again, "I can't help you." I could not take another disappointment. Those four words were crushing.
          But, I finally got referred to the right doctor, and he's only about an hour away.

          My other doc is a world-class peripheral nerve surgeon in Baltimore. I'm so very, very lucky to have these two guys. This time last year, I could barely walk, could not function in any capacity, and was borderline diabetic because I had zero appetite and had lost so much weight I was skeletal. I still have a long way to go, but my pain is managed now. The day they fixed my leg was the first time I'd smiled since August 28, 2011 - the last time I was able to ride my horse.

          I'm also glad that this forum exists! Some of you guys are way tougher than me - you take care of your own farms and such. I don't know what I would have done if I'd had to feed and muck stalls - although I once did it with an I.V. sticking out of my arm. (A long story involving everyone's favorite critter: The Carolina Fire Ant.)
          It was not fun. I'm glad I board.
          You are what you dare.

          Comment

          • Original Poster

            I think I've reached the "mind over matter" phase. I went for a follow up and was told there is nothing more he can do. He thinks I can tell myself that the pain isn't real and my brain will realize it and stop reacting. There's something to be said for that I guess... the nerves are not even there anymore. Mostly, I'm just depressed now. He wants me to start physical therapy. I'm sure some of the pain is muscle atrophy, but there is still something wrong with my leg. I go see THAT doctor in two weeks.
            I'm afraid of physical therapy. Would therapeutic riding be just as helpful? I would so love to sit on a horse again. My hot little mare might not be the best mount to start with, although I'm sure she's bored now.

            ETA: I'm in Germantown, MD so if anyone knows of a therapeutic riding center that you'd recommend, please let me know.
            You are what you dare.

            Comment


            • i'd say do at least a half dozen sessions of the PT. you may find that what the PT is having you do is stuff you can do on your own.

              as for a TR stable, there's TRRC in glenwood http://www.trrcmd.org/Welcome.html and circle of hope in barnesville (which may be closer to you?) http://www.chtr.org/appeal.html great strides is in damascus, so that may be too far: http://www.greatstrides.org/Great_Strides/Home.html
              ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
              Gravity works, and the laws of physics are a bitch.

              Comment

              • Original Poster

                Thank you for the links. I emailed the place in Barnesville. I'm not sure if my injury fits in their program but I thought I'd ask.
                You are what you dare.

                Comment


                • I used to think PT was stupid but that was only because I never had a good therapist. A good one can truly make a world of difference. A bad one is nothing more than a distracted personal trainer. I have gone back to my guy for multiple body parts and he made a huge difference right away. Definitely worth a try in my opinion.
                  McDowell Racing Stables

                  Home Away From Home

                  Comment

                  • Original Poster

                    Holy $#%< snacks, last night was bad.
                    Yesterday, my doctor said to try upping my gabapentin by a dose at night to see if it helped. So, I took an extra 600mg...
                    20 minutes later I had a short, piercing headache behind one ear, but it only lasted a few minutes and went away. Then the real fun began. As soon as I fell asleep, the night terrors began - suffocation, electrocution, paralyzed - and I knew I was dreaming, but I couldn't wake up. Then I started dreaming that I was able to wake up, or that my husband was waking me up, but in reality I was actually still asleep and "trapped". I could even feel the part of my brain that was hyper excelerated - I swear it was like it was buzzing. I don't know how many times I woke up screaming. They just kept coming over and over.
                    I finally convinced myself to fall asleep and just ride it out instead of trying to wake myself up, and that eventually worked. I am afraid to take more gabapentin again. I thought I was going to have a heart attack.
                    On the plus side, it helped with the nerve pain, but after last night, I'm not sure which is worse.
                    You are what you dare.

                    Comment

                    • Original Poster

                      I start physical therapy next Tuesday. One step closer to riding...
                      You are what you dare.

                      Comment


                      • I had that sort of reaction to topomax. It was the devil in a pill form for me.
                        McDowell Racing Stables

                        Home Away From Home

                        Comment

                        • Original Poster

                          Oh hell, Topomax. I still have some of that upstairs. I started out ok on that, but they kept upping my dosage and I swear I got every bad side effect and even the one good one - weight loss.
                          I eventually started having black outs. What a scary drug.

                          My doc wrote me back today to tell me that 600 mg of Gaba was probably too much... Thanks! Figured that out myself.
                          You are what you dare.

                          Comment


                          • Originally posted by GotGait View Post
                            I start physical therapy next Tuesday. One step closer to riding...
                            good. now i just hope your PT doesn't hurt you too much. (my most recent one (broken wrist) was fine; my first one (sprained back from parting ways with a horse), well, she and i had to have a few chats about what was and wasn't ok to do. )
                            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                            Gravity works, and the laws of physics are a bitch.

                            Comment

                            • Original Poster

                              I'm sure it will be horrible. I have trouble sitting in a car for 5 minutes much less driving.
                              But yay, today I got 100 mg Neurontin so I won't have another psychotic episode!
                              (It's the little things.)
                              <- Cool. A new smilie.
                              You are what you dare.

                              Comment

                              • Original Poster

                                And now I steamed my hand like a lobster. I didn't realize my husband had crimped the foil down tight around our dinner roast. Yeah, I pulled at the corner with my bare hand.
                                You are what you dare.

                                Comment

                                • Original Poster

                                  Has anyone had this thing or know someone who has?
                                  It's called a Spinal Cord Stimulator and my doctor is thinking about installing one if my nerves don't start cooperating. It's sounds awful.
                                  http://www.mayfieldclinic.com/PE-STIM.htm
                                  You are what you dare.

                                  Comment


                                  • Wow! Sending you many hugs, prayers and jingles! When you're going thru the pain of pt, concentrate on the prize...riding. Just keep focusing on your horse. It will be tough, I'm sure.
                                    Ride like you mean it.

                                    Comment

                                    • Original Poster

                                      Originally posted by ezduzit View Post
                                      Wow! Sending you many hugs, prayers and jingles! When you're going thru the pain of pt, concentrate on the prize...riding. Just keep focusing on your horse. It will be tough, I'm sure.
                                      Neither of my doctors think I should ride again. You should have heard me trying to explain to a non-horse person what a Paso Fino is and how it's not as bouncy.
                                      Brushing and being the carrot bringer is ok, but I can't imagine not riding ever again.
                                      You are what you dare.

                                      Comment


                                      • My Dad has a SCS. It was put in after 3 failed back surgeries.
                                        His works quite well for him. It has allowed him to avoid opiate pains meds which is good for him in his 80's. Plus the fact that he won't take them. His biggest complaint is where they put the "pocket" for the battery pack.
                                        It is barely below the waistband on his pants so he has to use suspenders to keep his britches up since he can't cinch a belt up...too uncomfortable. I would have a discussion with the surgeon on the placement of the battery pack where it will be the least intrusive.

                                        My father had a short term trial through a pain management doctor to see if it would work before they actually did any cutting. The doc placed the electrodes with fluoroscopy and he wore a fanny pack with the stimulator in it for like 3 days. After it was confirmed that it worked for him, he had the surgery to implant one.

                                        Susan

                                        Comment

                                        • Original Poster

                                          Thanks so much! We are still trying more nerve blocks, but that thing was brought up as a last resort. It sounds scary. I'm glad it works for your dad. It's nice to hear that it's not so bad.
                                          I think it can be installed on the front too which would make riding possible - unlike the butt pocket. Heh, butt pocket.
                                          You are what you dare.

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