Is Your Chelation Working?

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When the two-year study on the efficacy of Deferiprone was published one finding stood out. Patient-participant physicians submitted MRIs during several stages of the study; differences in MRI equipment, software, and magnification produced data that was difficult if not sometimes impossible to use. To correct this situation the research team began a project developing a software tool for use with the OsiriX DICOM viewer that would not only measure the exact amount of iron deposits with a 3D visual but answer the question is your chelation working?

With high performance and an intuitive interactive user interface, OsiriX is the most widely used DICOM viewer in the world. It is the result of more than 15 years of research and development in digital imaging. It fully supports the DICOM standard for an easy integration in your workflow environment and an open platform for development of processing tools. It offers advanced post-processing techniques in 2D and 3D, exclusive innovative technique for 3D and 4D navigation and a complete integration with any PACS. OsiriX supports 64-bit computing and multithreading for the best performances on the most modern processors. OsiriX MD, the commercial version, is certified for medical use (FDA cleared and CE II labeled). More than a medical images viewer, OsiriX MD is a powerful diagnosis tool. OsiriX has been developed to allow to efficiently view full radiology exams and allows full review images with ease of use for Radiologists, Medical care providers, Institutions and many others. -OsiriX

Iron Quantification MRI Protocol

The research team identified the need for an MRI tool that is sensitive enough to quantify the amount of existing iron and detect differences over time in a reliable, reproducible and quantifying MRI measure that can be applied in a blinded fashion and validated across multiple centers. What exactly does this mean? When the double-blind Deferiprone study begins researchers will need a consistent way of reviewing participants’ MRIs without knowing if the individual is receiving chelation with deferiprone or the placebo.

This diagnostic software would also be invaluable to your physician by offering a tool to track your iron removal progress in a definitive and measurable fashion.

This video is a demonstration by Dr. Remi Kessler, Research Analyst, Department of Neurosurgery, Mt. Sinai Health System, on how team members used the OsiriX during the Johns Hopkins Deferiprone study. Dr. Kessler was instrumental in developing this novel whole-brain quantification technique. The software tool is being further developed to simplify the process. Please note this demonstration is intended for physicians and is a technical presentation.

This project is currently an ongoing collaboration between Massachusetts General Hospital, Boston, Johns Hopkins Hospital, Baltimore, and Queens College, London. Estimated funding need to complete this project is $50,000

About Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. We invite you to join us as we share the details of our life, finding care, and the search for answers of how to navigate this extremely rare disorder.

4 Comments

  1. Me & my doctors in UOL Louisville decided not to go that route. I have however just had a new MRI and it seems there are no changes since my last brain MRI in 2017. But what is happening is the acceleration of symptoms they spoke of. To me this means, even if the bleed has stopped, the symptoms will get worse.
    I get my next shot 1-2-20, it takes away much of my pain. But what’s happening now is weakness in my legs, balance is just silly and the latest, the bottoms of my feet HURT, and feel like walking on rocks.
    All in all it’s quite an adventure.
    Marry Christmas. !!!!

    • Merry Christmas Maggie! This journey we’re on is a tough one but there are still happy times to enjoy and for that I am thankful.
      Rori

      • Hi Rori
        What a difference a day makes. Olivia Kelley, the new firecracker Doctor at the pain management clinic here in Bardstown KY, and has the red here to prove it. She never heard of SS, but when I presented my latest lumbar MRI, she has treated Arachnoitis and told me I will not be given anymore shots of Depo Medrol . But she went all out with medications, tests and interest I’ve not received since my diagnosis. She has even reached out to other doctors for consultation.
        Even with all the new developments with chealation , I would not want to try , right now anyway, the updated meds; mainly because , after almost 18 years since my surgery , the damage already done, in my estimation , would be a monumental task to undo.

        • Hi Maggie, I think pain management clinics are great for the simple reason they seem very motivated to find a solution instead of just loading a person down.

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