Heading down a different road…

    • Anonymous
      August 7, 2008 at 3:16 pm

      I’ve been having tests done this summer at Univ. of Wis in Madison with a “real” neurologist. From the first time we met and did some of the in office tests, you all know them…touch your finger to your nose, touch my nose, yada, yada… He was suggesting central nervous system as apposed to peripheral.
      He read my history of GBS, did the nerve mapping and an MRI of the brain and C spine. Saw him yesterday for the results and got a brand new education-Chiari I Malformation. Anybody heard of that one? It may be totally unrelated to the residuals, or now I ask myself if it has been residuals.
      So the next step is a neuro-surgeon. Chiari I is a defect in the part of the brain that controls balance. It has to do with the brain stem putting pressure on the upper spine and blocking the flow of cerebral spinal fluid.
      It has to be fixed. So wish me luck.
      Just another entree to put on your plates if you are without answers after years of looking, as I was.

    • August 7, 2008 at 3:26 pm

      wow JayDee very interesting. Please keep us informed and let us know how you are and how things are going. Prayers!!

    • Anonymous
      August 7, 2008 at 4:06 pm

      Hi JayDee,
      You will be in our thoughts and prayers that all will go well with the surgery. Just like we never heard of GBS/CIDP until we were struck with it, Chiari 1 is something you never hear about until you’re told you have it.

      I wonder about myself sometimes, but I’ve seen enough neurologists, some of them tops in their fields, to accept that CIDP is the correct diagnosis for me. My balance isn’t too bad, when I stand there’s just a “whole lot of shaking going on.” I basically was treated with IVIG’s, which did bring me to a remission, but since I’m severe, many times I’ve wondered if Rituxan or Cytoxin would have brought better improvements.

    • Anonymous
      August 7, 2008 at 4:11 pm

      Chiari Malformation is actually quite common these days. I was told that it’s probably always been common but people are getting more MRI’s now so it’s being dx’d more often. In most people it doesn’t cause any problems & they live their whole lives not knowing they have it.

      Emily was dx’d with a Chiari Malformation as well. Her brain stem is something like 1 MM too long. We were told not to worry about it because it shouldn’t cause her any problems.

      Good luck at the neuro-surgeon’s office.

    • Anonymous
      August 8, 2008 at 2:34 am

      Neuro called me yesterday and said no nerve biopsy here in my town so Duke it’s going to be. Just waiting for the Green light to go. Can’t be soon enough for me! So tired of waiting. But happy you got diagnosed and maybe now you can get treatment an start feeling better soon.

    • Anonymous
      August 8, 2008 at 3:46 am

      JayDee, A niece had the surgery(i think they also had to put a shunt in) and she is fine and having no problems. I hope everything comes out well for you. Please keep us updated. Take care.

    • Anonymous
      August 8, 2008 at 7:45 am


      they found that I have the Chiari I malformation, too. I have pretty bad balance…always falling to the left. Strange. They told me mine is “likely” not symptomatic but to watch for severe headaches.

      Maybe you will go to the neurosurgeon and find that you dont need surgery.

      Please keep us posted.

      best wishes,

    • Anonymous
      August 8, 2008 at 8:00 am

      Thanks all, for your responces. A close friend is a surgical nurse and said she has assisted in many Chiari correction surgeries. She says the success rate is good, but the procedure kind of scarey. Looking at the past 4 years, if I get relief and my life back, I can handle the surgery.

      Will let you all know, thanks for the thought and prayers.

    • Anonymous
      August 8, 2008 at 10:07 am

      Hi Jaydee,

      Just want to add my thoughts and prayers here. i am glad you have a diagnosis and hope that surgery is not required, but either way, take care and be well.

    • Anonymous
      August 8, 2008 at 2:30 pm

      Hi JayDee-also adding my thoughts and prayers to the others that you will get the neurosurgeon’s input and go from there. Nice to have that input from your close friend too. All my best to you.