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Arachnoiditis: Trying to find a specialist
I am from North Carolina. And out of the 15 doctors I have seen since 2015 have said that arachnoiditis is rare and you do not have it. But no one is listening to my symptoms. Received a shot in my L5. But the doctor missed and hit the nerves while injecting Since that date I went from being able to walk to not at all. I am now in a wheel chair. Pain is in both legs to toes. None of the pain meds that my pain management has prescribed touches the pain. I have jerks in both of my legs. Weakness. Tingling and numbness in feet. My right eye has lost vision. I sweat on the top of my head for no reason. And out of the 3 MRIs I have had none have been done on the lumbar wth contrast. The pain gets worse week by week and no luck on finding a doctor. We are willing to travel if necessary. Please help.
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Hello. Thank u for ur email. I had an intramedullary spinal cord tumor. It was respected in 2009. It was at level C7-T3. I have severe neurological deficits n now also have arachnoiditis. I am a patient of Dr. Lubenow at Rush in Chicago. I have an intrathecal pump implanted w/morphine, bupivacaine, n clonidin. I have severe neuropathy everywhere except my hands arms n head. I live a miserable life. Any help, info, or support group would be appreciated Thank You very much!!<br />
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1 ReactionHi @Tbato622
Let me start by welcoming you to Connect. I agree that when dealing with a chronic condition, it is helpful to find a support group - people going through the same thing. Let's hope that @bfsecurityguy and @c_edward will respond to this message when they get the email notification.
What kind of pain do you have and how are you managing it?
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1 ReactionHi. My name is Theodora. I too suffer from arachnoiditis. I am a patient of Dr. Lubenow Rush Chicago. Yes epidurals,mylogram, etc do cause arachnoiditis. I live in severe pain every waking moment!! I also have an intrathecal pump implanted in my abdomen. Plz respond. Any recommendations would help. Need support group.
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2 ReactionsHi. My name is Theodora Batistatos. I suffer from arachnoiditis. Any support or info would help. Thank u<br />
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Hi. Yes I am on Facebook as Theodora Fitusis Batistatos. I am a patient of Dr. Lubeow at Rush Chicago. He's a GREAT doctor. I have an intrathecal pump implanted but ANY other recommendations would be appreciated. <br />
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<p>I am desperate to find a dr who treats arachnoiditis. I live in lake county and no one around here can help me. I have been in pain management for almost 3 years. I want out!!!! I want my life back but can't find anyone who wants to help me..I'm so tired of being in pain, feeling like a failure to my family and feeling alone. Any help much appreciated.</p>
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9 ReactionsHi Theodore... If you type in Forest Tennant Arachnoiditis specialist in California then it will pull up all of his info. Are you on Facebook?<br />
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1 ReactionHi. I'm Theodora. I would love to join the Facebook page. <br />
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Hi! I've been suffering for almost 5 years constant back pain with terrible muscle spasms. I can't stay in one position for long because of the pain. This started right after I had my epidural for my last child. I had to have a c section for both my kids with no problem with the first. I've been seeing my general practitioner for 4 yrs and have had absolutely no relief and they can not tell me what's causing this. I'm a physical therapist assistant so I've always been active and caution with my back but I can not even work. I have difficulty raising my kids because of the pain and barely sleep at night since it wakes me up in terrible pain. I've been searching for years to find out what's wrong and came across arachnoiditis. I get occasional tingling and numbness in my legs but it's inconsistent. Any suggestions?
Hi. My name is Theodora. I am a patient of Dr. Lubenow Rush Chcago, IL. I suffer from arachnoiditis and many more neurological deficits. Any support or info would be greatly appreciated. Thank u. <br />
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