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    Posted February 28, 2014 by
    cjcleminson
    Location
    Warren, Michigan
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    In the blink of an eye

     
    Throat issues. We thought my husband had some throat issues from a major job change. Small shop to huge steel plant, lots of yelling, stands to reason someone might be hoarse. He decided to go to the doctor when he was eating yogurt and pudding; and even that was choking him. Acid reflux was the diagnoses & oddly, the meds prescribed did help for a little bit. When that wasn't working and things are worse, doc says he has a paralyzed left vocal cord and schedules an exploratory to find out why. Then, at the end of his midnight shift on 12/16/11, his left eye "fell". I thought he'd gotten something in his eye and set off for all the OTC stuff I could get. My 12/18 he was in bad shape and off we went to the emergency room. They were useless. On 12/19 I was able to get him an immediate appointment at an ophthalmologist, who within a few minutes declared my husband had 6th cerebral nerve palsy and needed a neurologist. So much so that he got us an appointment at one down the road that afternoon. Neuro said he needed an MRI, which I was able to schedule for the next day. On 1/4/12 the neuro says we need to see a neurosurgeon and referred us to one that was able to see us the next day. I still feel as if I was floating in the room looking down, kind of hearing that my 35 year old husband needs brain and spine surgery, urgently. Chiari Malformation he says, and continues to speak calmly and rationally. All I want to scream is, WHAT?! I'm hearing that his brain has fallen out of the skull and his also has Syringomyelia, cysts on his spine. On cranial decompression day, we hear that he also has poly cystic kidneys. Great timing on that news, doc. Post-op we expect him to recover and be back to normal. Vision, no change. Pain and numbness, weakness, tingles, etc throughout the left side, no change. Some pain is worse. Months go by, nothing but worse. 7 months passes and he is acting as if he doesn't know me one day. He's sluggish, almost as if he was drunk. Back to the E.R. I hear people running toward his room saying, "critical blood sugar, room 111". Hell, we ARE room 111. Blood sugar is nearly 1,000. Sudden adult onset type 1 diabetes, you have GOT to be kidding me. 1st anniversary of decompression, nothing is better and we are fighting for disability. By now he can't speak above a whisper, his vision is completely messed up, he is in constant pain from head to toe throughout the left side. No meds are working, Botox was a bust. We had to short sale our home, sell his truck and short term disability has come to an end. I started to feel like my life was a bad country song. Looking at him this way was heartbreaking. Not being able to help was excruciating, helpless has never been for me. Doctors report severe and irreversible nerve damage, loss of motor skills/function and basically no other suggestions for treatment. We are beyond hard pressed to even find a doctor that knows about Chiari and Syringomyelia.... or for that matter, even any current research. These conditions steal lives. They know no color or age. They are misdiagnosed as anything from migraines to depression. Pills are thrown at those that suffer day in and day out, pills that don't come close to helping. So far in 2014 we have lost 11 people, some from conditions brought on by Chiari and some committed suicide because they just couldn't deal with it anymore. There are thousands of people being mistreated, misdiagnosed and misunderstood every day.... because there just isn't enough knowledge about these horrific conditions. I hope I have in some small way helped to change that. Thank you for the opportunity.
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