Guest guest Posted October 11, 2003 Report Share Posted October 11, 2003 Hi - I'm new to this group. I've just been diagnosed with diastematomyelia after 7 years of increasing pain and disability. I'm glad to finally have a diagnosis but upset that it has taken so long and that I spent so many years being discounted and not listened to by medical professionals. I'm being admitted to the National Hospital for Neurology and Neurosurgery in London for exploration and de-tethering surgery in three weeks time. I'm feeling a bit scared and alone with this and I think it would help a lot to have some contact with people who may have had similar experiences. I would be grateful for any responses. Monika -- Monika South Wales UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2003 Report Share Posted October 11, 2003 Welcome Monika, This is a great group. My daughter, , had thickened filum release in Jan. I think nearly everyone in this group can relate to the frustration with the merry-go-round of professionals and doctor-do-nothings. You are not alone (but I know the feeling)! Best wishes, 's mom Diastematomyelia Hi - I'm new to this group. I've just been diagnosed with diastematomyelia after 7 years of increasing pain and disability. I'm glad to finally have a diagnosis but upset that it has taken so long and that I spent so many years being discounted and not listened to by medical professionals. I'm being admitted to the National Hospital for Neurology and Neurosurgery in London for exploration and de-tethering surgery in three weeks time. I'm feeling a bit scared and alone with this and I think it would help a lot to have some contact with people who may have had similar experiences. I would be grateful for any responses. Monika -- Monika South Wales UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 I just had my Diastematomyelia operated on 9/28/2004, which was caused by a small piece of bone (or septum) that split the cord into 2 parts. When the bone was removed, my doctor then untethered my spinal cord. I am still in the recovery stage, but doing very well. > > I have this an a thickened filum, feel free to email me. > > Carey > Hove UK > > > > I have this condition, you can email me > > > > Carol Barber > > TECHSolvers, Inc. > > MAKING BUSINESS SYSTEMS WORK > > 5455 Corporate Drive > > Suite 206 > > Troy, MI 48098 > > > > cbarber@t... > > > > > > > > > > diastematomyelia > > > > > > > > Hi...I am an adult with this condition, and would like to speak to > > anyone who > > has it...thanks... > > > > > > Quote Link to comment Share on other sites More sharing options...
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