Quote:
Originally Posted by COWPATTY
Okay, I Have Never Posted Any Thing, Dont Know If This Will Work But Here Goes. I Can Only Hope A Neurologist Reads It. My Son 19 Had Surgery 1 Year Ago For Chiari Malformation And Syringomyelia. It Looked Like The Surgery Went Great. But He Had Another Mri And His Brain Stem Has A Kink In It And It Did Not Have One Before The Surgery. The Surgeon Said It Is Not A Problem, But I Am Worried That It Is, Maybe He Did Not Want To Scare Me?? Does Any One Out There Know Anything About This Sort Of Occurrance After A Chiari Surgery?? I can be contacted via this forum. I Just Got This Sick Feeling That I Thought I Woulf Go On Line And See If Any One Had Any Answers. Instead Of The Stem Of His Brain Having A Smoothe Slope It Has A Kink Now. Thanks For Listening Patty!
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on june 23rd 2009 my son was admitted to addenbrookes hospital cambridge uk for decompression surgery..on the 24th the operation took place and as far as we were concerned all went went...but the next day my son developed breathing probs and was rushed in to neuro critical care...where he was sedated and tubed....after 3 atempts of trying to get the tube out ..they performed a trachoeostomy..a few weeks along the line..he had a lumber puncture and the the pressure was high...before they got him to surgery he had a fit ..unbeknown at the time this had kinked his brain stem...a drain was inserted and a MRI revealed the drain was in the right place but it also revealed the kinked brain stem. and in time this was removed and we were given the news my son was NOT going to recover...But he did...slowly from no movement at all to slight flicker of his eyelashes but my son was alive...the kink in his brain stem has affected his breathing swallowing coughing and gagging reflexes..also he retains a high level of co2.....he has been in hospital for one year and one month so far and we are awaitng rehab...but are fighting for funding to get him there as he is such an unusual case there is no nursing staff to care for him...hence we are in HDU...our hope is to have him walking again and off the oxygen and with intensive rehab getiing him to a near normal life again.....
i'm interested to see if there are anymore adults with a kinked brain stem and also any doctors who could have any input in my sons case...also from anyone else who have had a chiari....
best wishes to all
amanda.
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