Announcement

Collapse
No announcement yet.

neuropathy/cauda equina pain

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #31
    Springville girl, I haven't heard back from SideStix, either...though I did receive an automatically generated acknowledgement in my inbox saying that they attempt to reply within 24 hours. My thought is that maybe the weekend got in the way. Did you receive an automatic reply after submitting your message to them?

    I also wrote to my insurance company and asked them what they would pay on custom crutches with a doctor's prescription, but have not heard back from them, either. I am anxious to get moving again with these great crutches!
    MS with cervical and thoracic cord lesions

    Comment


      #32
      Just out of curiousity, has anyone tried hypnosis? I realize it sounds wacky, but if meds are ineffective, maybe some alternative therapies are worth a try.
      Tom

      "Blessed are the pessimists, for they hath made backups." Exasperated 20:12

      Comment


        #33
        I tried. Pain level way too high and I seem to be not a goodd hypnosis candidate
        Kindly,

        The Ketamine Kitty

        All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

        Next time I die make sure I'm gone,
        don't leave 'em nothing to work on JT

        And I ain't nothin but a dream JM

        Comment


          #34
          I happen to know that Sarah Doherty and Kerith who are the SideStix people are at a convention in the Boston area so they aren't in B.C. right now. So that may be why they haven't got back to you yet.

          I am glad you are so psyched to use them and to get out on the trail. Sounds like you want them yesterday.... ! I hope it opens up terrain for you as it has for me.....

          Comment


            #35
            Hi Bonnette, yes, i got the automated e-mail too. But now that Arndog let us know the Sidestix people are in the states, we know we'll get to hear from them hopefully soon.
            I am going to call my insurance Monday, if you don't mind, let me know what became of your answer as far as their helping pay. I was refused payment (from Blue Cross) shortly after my injury, for my standing frame. it had gliders, so they called it "exercise equipment". I went through 4 appeals, lost them, finally i appealed with the the State of California, (pleaded my case) and i WON!!!
            But... if i get grief this time, i think i'll just pay and go hiking! Save my energy for hiking and not fighting with insurance. I HAD to on the frame though, it was 6700.00 versus approx 1000 for the sidestix. Hope we both get them and can have have success on our next chapter!

            Comment


              #36
              Arndog, do you mind me asking if you have use of your lower legs. dorsiflexion/plantarflexion, calves , ankles etc. If i don't, you still believe these sidestix will make up for the lack of this on me?

              Comment


                #37
                Hello Bollefen, i forgot what you said you were using for pain meds, do you use neurontin? Norco? The norco just helps with my sore joints, and all the damage i do to myself falling, and all the damage i did to myself prior to my accident. the Xanax helps to just chill u out when your anxiety is so high from the pain. I am having a reprieve right now, (i think only from really backing off on all my activities which aggravates things) when i say reprieve, i have interest in going back outside, going places, otherwise, when it's unbearable, pain pills don't touch it, i hole up at home, and feel really bummed. I sure identify with you, we need Miami Project to come up with something for this pain. I know they are working on it. Do you ever go to the Miami Project site. i tried to be a guinea pig once for a research trial (for neuropathic pain) in Massachusetts, but they cancelled it. ): If and when something comes up that sounds promising in Miami, i'll sign up and see if they take me. Bad part is, you have to go off the meds you are taking. That scares me, i know my body is addicted to what i am taking. Hopefully they would have something to help me get through that part IF, i was able to be in a trial.

                Comment


                  #38
                  SG - I have nothing below the knee on my left leg and full motor function on the other but missing sensory in both. How do you fair using forearm crutches now? Didn't you say that you graduated from them to canes?

                  Comment


                    #39
                    arndog, here is how i graduated. Tall "baby walker" with KAFO's, after knees locked out, i went to a walker with a seat, to forearm crutches, to two canes, to one cane. I was marching to clear my feet from dragging, and really risked breaking an ankle if i didn't land flat. I was convinced to get afo's at South Carolina University. We tested my ankles 6 months apart, nothing had returned. The Afo's (both legs)
                    turned out to be a good decision, but i have stayed with the one cane thinking anything that makes things harder for me has to be best.
                    I have deep sensation, no light, limited hot and cold. My static balance is mostly 3-4 seconds, but was able to stand 14 seconds once.

                    Comment


                      #40
                      Springville girl, I will definitely let you know when I hear something from the insurance company, but mine - like yours - is BCBS, so they'll probably call these "sport crutches" exercise equipment, too!
                      MS with cervical and thoracic cord lesions

                      Comment


                        #41
                        If you can walk with one cane. You will be way faster and secure with forearm crutches.

                        Comment


                          #42
                          Originally posted by springville girl View Post
                          That scares me, i know my body is addicted to what i am taking.
                          Remember that there's a difference between "addiction" and "dependency". For example, a diabetic might be dependent on insulin, but that's different than being addicted to it. People who take legitimately meds to control severe, chronic pain have a dependency, not an addiction. It can be possible to develop a physical addiction to meds upon which you are dependent, but there is a distinction there.

                          Comment


                            #43
                            arndog and david, this is why i am interested in the sidestix. AND.. i want to see if i can go up and down stairs without handrails which is pretty dangerous for me with one cane. Balance is off as soon as you make that next step.
                            As for the dependency vs addiction, i understand.

                            Comment


                              #44
                              S.G. and Bonnette,
                              Did you ever hear from SideStix? I am also curious what your insurance would cover for the 'mobility aids' of crutches and a wheelchair.

                              Back to the title of Cauda Equina pain, I did some stationary bike today and it is like clockwork how it flares the burning dysaesthesia in the butt. It is the price I have to pay for staying active....

                              Comment


                                #45
                                Arndog, I never heard back from SideStix. Nor did BCBS answer my e-mail, so I called them today and the rep said that custom crutches are considered experimental and as such wouldn't be covered as durable medical goods. Why am I not surprised?

                                Regarding your cauda equina pain, are you using an upright stationary bike? The upright bike causes exactly the same kind of pain for me, and a PT told me that recumbent stationary bikes are better for cauda equina symptoms because the low back is supported and the center of gravity is different. So...another chunk of change down the drain!
                                MS with cervical and thoracic cord lesions

                                Comment

                                Working...
                                X