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Old 05-03-2012, 02:18 PM #1
sew139 sew139 is offline
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Join Date: May 2012
Location: Harrisburg PA
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sew139 sew139 is offline
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Join Date: May 2012
Location: Harrisburg PA
Posts: 2
10 yr Member
Confused arachnoiditis? and/or CSF leak?

I have spent years and thousands of dollars to find out just what happened to me. I had a myelogram performed in Jan 2001. I had an immediate reaction to the dye and even felt it go up my spine to the right side of my head. The pain was so intense and I immediately felt like vomiting. I have had two children naturally (without pain meds), I have had several broken ribs, closed head trauma, spinal fractures and pelic fractures!!!(MVA) None of these things compared to the pain I felt that day!! I honestly thought I was going to die! The radiologist freaked out and said "all the dye is in your head" apparently it's not supposed to go there. Doesn't matter though, I had the reaction to the dye before it got to my skull. I was told I had a panic attack. Even though I could not balance byself to sit and needed two people to help me walk; I was wheeled to my sister's car and basically dumped in her front seat. After 3 blood patches and 1 week of laying flat. I was admitted to the hospital and stayed for over a month. It took a year of intensive PT to learn to walk again and go back to work. Now I have had a flare again and have been out of work for 6 years on dis.
Thank you letting me tell my story, I just need to share with people who understand and BELIEVE ME!! Becuase my disability can not be seen, people think I am making it up. I wish I would have found this website years ago.
Sincere Thanks....SEW
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Old 09-11-2012, 02:53 PM #2
hmarie18 hmarie18 is offline
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Join Date: Feb 2012
Location: MD
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hmarie18 hmarie18 is offline
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i am so sorry you went through all that.... I have symptoms of arachnoiditis, I just found out about this disease so I dont know much about it, other than it can be caused from myelograms as well as steroid injections using depo-medrol...Im talking to my dr about it fri... and sorry it is frustrating when drs dont know whats going on so they dont believe you or think you are not in as much pain as you are describing... good luck, I hope things get a little better for you!
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