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  • HI all, new here

    Hi all, I am new here, been lurking around reading for the past couple of days or so. I do not necessarily have an SCI, but, I was born with Spina Bifida Occulta with L4&5 formed incorrectly. My parents took me to the dr at 5 yrs old when a patch of hair started growing on my back. I have had no problems until the past five years or so.

    Had a car wreck in 2003, t-boned in the drivers side, lost conciousness, but only ached from the impact. However, I am now wondering if this had anything to do with now,

    Fast forward to today, and I can barely sit down at my desk, I'm an accountant, for more than 30 mins at a time. I am in constant pain, my back feels most days like someone is stabbing me, add to that the burning/tingly/electric shock feeling that goes down both my legs to my toes, and I am a miserable wreck.
    I've seen 3 GP's here in this tiny town I live in, had to beg to get an MRI done last year, and dr told me there wasn't anything significant on it, here's some pain meds, it'll get better in 4-6 weeks.
    Well it hasn't. I'm trying to get in with some dr's at Duke in Raleigh(about an hour and 1/2 from me) and go from there.

    In the meantime, I have gotten a copy of the disc with all the xrays, mri's and ct scans on it, does anyone have any idea what this means on my MRI results:

    L4-L5, there is disc dessication in mild diffuse disc bulge, deformity of the spinal canal is noted which appears somewhat vertically elongated. Prior defect in the posterior element is seen.

    At L5-S1, sclerotic changes in the posterior element are present, the spinal canal and neural foramina canals are intact. No definate spinal canal norrowing is noted. Epidural lipomatosis is noted and L4 extending distally. No spinal canal compromise identified.

    Degenerative changes at L4-L5, deformity in the spinal canal presumably from prior spina bifida. There are sclerotic changes in the posterior elements of L4 and L5 from calcifications when compared to a prior CT scan.

    And, these are the results that the dr said, nothing significant. I am having a hard time even getting them to refer me to a specialist, I'm probably going to have to go one at Duke that doesn't need a referral (my insurance will pay either way) before I can continue. Two docs turned down seeing me b/c of the SBO after looking at the images on the disc.
    I know there are a lot of people here who have it a lot worse than me, so I am very thankful for the things I do have, but I have missed countless days of work, seen numerous doctors and they all seem to think I have a head problem, not a back problem. I just want answers and they seem so hard to find.

    Thanks all!

  • #2
    Hi Brooke, welcome to the forum. You are so right, answers are hard to find and it's a very frustrating dilemma for so many of us! I don't have the expertise to comment on your MRI findings, but I hope that they will be given a serious review at Duke and that someone there will not only have answers for you, but correct ones!
    MS with cervical and thoracic cord lesions


    • #3
      Several years ago (pre MS) I had severe leg pain from a ruptured disk (showed on MRI). Because I also had significant stenosis, surgery was not an option, and I hated being on narcotics. My case was different from yours except the pain.

      That said, I got off narcotics, and sought out alternate pain-management treatments. The three therapies that eventually work(ed) for me are aqua therapy, myofacial massage (aka myofacial release), and psychological pain counseling.

      Aqua Therapy - I found a PT clinic that had a walking pool: a chest-deep, warm-water pool with an underwater treadmill. It was a live saver. I had several 1-hr sessions with a therapist, then went on my own 3x a week (hr-long) for several months. Then 1x a week for many more months just to maintain.

      Myofacial massage - concurrently with early Aqua (2x week for 2-3 months), I was seeing a massage therapist who knew how to do Myofacial massage: a very gentle massage aimed at freeing the nerve fibers to move freely within their myelin sheaths. For example, when the masseuse would gently massage my feet, I could feel it in my neck.

      Psychological training taught me how to relax. The pain in some parts of my body led me to unknowingly favor them and tense up other body parts causing them pain, too. Thus without learning relaxation techniques, my pain kept spreading.

      Hope that helps.

      Here's a youtube video of myofacial massage similar to what I had. (Note: my masseuse provided a robe.)
      (another note: I also tried chiropractic, but my chiropractor, quickly concluded he couldn't help, and referred me else where. I also tried a physiatrist, regular PT, spinal traction (static and very slowly pulsing), spinal injections, I never tried acupuncture, but it was next on my list.)
      Last edited by chasmengr; 05-27-2011, 10:11 PM.
      TiLite TR3
      Dual-Axle TR3 with RioMobility DragonFly
      I am a person with mild/moderate hexaparesis (impaired movement in 4 limbs, head, & torso) caused by RRMS w/TM C7&T7 incomplete.

      "I know you think you understand what you thought I said, but what I don't think you realize is that what you heard is not what I meant."


      • #4
        Brooke, like Bonnette said, I dont have the expertise to comment on your MRIs but I do live in Richmond VA and my son has a spinal cord injury. If you are interested in seeing any drs at VCU I may be able to help. Where in VA are you living?


        • #5
          Thanks for all the kind replies, and sorry for not replying back any sooner. Had an appointment with ortho doc @ Duke last week, and he looked at my MRI, I have a bone missing in L4, where the bulging disc is at and I have a tethered cord. Up next, Neurosurgeon appointment Monday at Duke. Still in pain every day, but now at least i am getting some answers and feel as if I am going in the right direction.

          Scary on the detethering surgery if I have to have it, guess I will find that out on Monday.


          • #6
            Oh, and Sharon, I live about an two hours south of Richmond, in Halifax County VA.


            • #7
              Yes, it's good you're getting answers - it does sound like you're headed in the right direction, and that's more than half the battle! Hope you will learn even more at your upcoming appointment with the neurosurgeon - keep us posted, and all best wishes to you.
              MS with cervical and thoracic cord lesions


              • #8
                welcome to care cure.
                there are lots of folks with SB here.


                • #9
                  Welcome Brook! I can't comment on your surgery. I'm in Charlottesville but I know lots of folks in Halifax.
                  "It is every man's obligation to put back into the world at least the equivalent of what he takes out of it. Try not to become a man of success but rather try to become a man of value." - Albert Einstein


                  • #10

                    So I really like the neurosurgeon they sent me to, really nice, personable, and took time to answer questions, gave me something for pain until we know the outcomes of tests etc. So life has been much better the past two weeks.

                    Going down to Durham Wed night to have an MRI (the one they did last year was done w/out contrast and they want one with) and then another test (don't remember what it is, just remember which clinic number I have to go to LOL) So me and hubby will spend the night down there Wed night, the MRI is at 9pm! And then see the doc at 11am to determine what's next

                    After fighting with Anthem to approve the MRI, boy was that interesting, they said it was medically unecessary, b/c they thought I'd had 2 MRI's in the past 2 years, ummmm, what are you smoking, can you not read your billing info? Wonder how much of a fight they are going to put up if I do have to have surgery since they thought a simple MRI was unneccesary? I forget sometimes, healthcare is not between you and your doctor, it's between you, your doctor, and the insurance who ulitmately determines your fate

                    Thanks all for the kind words, didn't know if I needed to just keep posting on this thread or start a new one, hope everyone has a wonderful day!



                    • #11
                      So glad you like the neurosurgeon and won your battle with Anthem over the MRI! Insurance companies are certainly the guardians at the gate when it comes to health care - their gate to our money. You might have to fight them again if you need surgery, but with your neurosurgeon's support they surely won't put up too much of a din.

                      It's fine to keep posting general updates here - if your situation takes a new turn and you need specific input about that, starting a new thread on a particular forum (i.e., Care for treatment issues, Pain for discomfort, and so on) might ensure the widest readership.

                      Thank you for your update, best wishes as your diagnostic work proceeds and treatment options become clearer!
                      MS with cervical and thoracic cord lesions


                      • #12
                        Thanks Bonnette! Yes, I had to call Anthem, the PA to the neurosurgeon had a peer to peer review with Anthem, my local agent called Anthem, and then I had to fax a bunch of reports from previous CT's, MRI's, Xrays, etc to the doctor to then have them fax to Anthem, along with their notes on all the errors in the, the two MRI's when I only had one, no reported numbness or weakness in leg(my right has both), and no reflex problems (again, the right leg has noticeable decrease in reflex, hit the left knee, and hit the sky, hit the right knee, and it barely bounces). I'm just so glad the PA kept fighting for it too, since they scheduled it for sooner rather than later, and I didn't want to have to cancel the hotel room and the other tests and reschedule everything since I have it set up as Wed night MRI, Thursday morning, tests at 8:30, then doc visit at 11am. Trying to save gas and time off work.

                        They are not sure I have a tethered cord, but, that's what the new MRI will determine. I was more put at ease with this doc, he didn't scare me to death with oh you've got this and this right off the bat, he was more laid back and let's get the new tests and then we'll discuss. Wonder if he's more that way because he's a pediatric neuro and not an adult? He only sees adults that were born with birth defects etc.

                        Phew, sorry for the long post. I was in a horrible mood yesterday after fighting with the insurance, but hopefully I will have news/answers on Thursday and find out where to go to from there. Much better today...

                        Just hope they do not want to do the surgery before Sept 17th, my cousin, who I babysat long ago (11 yrs my junior) is getting married, and I'm not in the wedding, but I would be so so so upset if I didn't get to go, but if all goes well and they do the surgery quickly, hopefully I'd be on the mend by then.


                        • #13
                          What a nightmare it is to gather all the paperwork - and personnel - needed to fight insurance companies. They count on people not having the stomach to jump through all those hoops, so kudos to you and your health care team for persevering. It's unbelievable, how wrong the insurance companies' records can be!

                          I also hear you about not wanting to have to reschedule your workup. It is insanely nerve-racking to coordinate doctor appointments, hotel dates and transportation schedules - most of that is left to the patient, who is hardly in the calm frame of mind necessary to negotiate all of that.

                          If you do need surgery, probably you'd feel better for your cousin's wedding if you had it done after the ceremony - recovery from spinal cord surgery can take awhile. It's not easy to assign priorities, to say the least - but I do hope you'll be able to attend the wedding and feel good while you're there. That's quite a milestone, watching the one you once babysat getting married!

                          So glad to hear you're feeling better about things now. I know how jangling it is to deal with insurance companies, believe me.
                          MS with cervical and thoracic cord lesions


                          • #14
                            Sounds like you are on the right track. I'm glad to read that you are seeing a pediatric neurosurgeon who is ruling out tethered cord. I encourage you to stay very proactive in pursuing treatment. Make it your highest priority. It is very difficult to recover lost function - so do what you need to do to preserve what you have.

                            "We have met the enemy and he is us."-POGO.

                            "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

                            "Dream big, you might never wake up!"- Snoop Dogg


                            • #15
                              Yes, the NS actually was surprised that when I was born, they did no surgery. But I guess back in 1977, being that the hole was closed on my back, and the hair didn't start growing there until I was 5, there was no need for anyone to think anything was wrong.

                              I will pursue this to the end, b/c it's got to be better than living with this pain that debilitates you on a daily basis! I know my hubs and daughter are so tired of hearing, mommy doesn't want to do this b/c I just don't feel like it today