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Arachnoiditis: Trying to find a specialist
Spine Health | Last Active: Nov 30 4:16pm | Replies (326)Comment receiving replies
Hi. 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.
Replies to "Hi. My name is Theodora. I too suffer from arachnoiditis. I am a patient of Dr...."
Livingwitharachnoiditis.com and facebook groups too. Arachnoiditis just search engine should pull them up and mr. Secret so you have to sometimes email people and let them know your condition before they'll let you in but it's no big deal but try to get in one they're really great and then all else there's paint National pain network.com or maybe International Pain network.com try both
Hi Jim, well I guess it doesn't matter. Pain pumps are made in Puerto Rico, and we all know what just happened to that poor island. So there's a temp ban on all implantations. I really am trying to hold on tight now. My pain levels are insane. Thanks Jim.
@lconroy
Here is an article that you might find interesting, we shared it at our Living & Thriving Support Group.
please look up information from Dr Forest Tennant. Many of your issues are probably caused by the arachnoiditis, His information has helped me greatly to find relief on my own( Kratom, DXM, oxytocin etc) because the doctors all blow me off and even pain management will not prescribe anything except lyrica and for a year after diagnosis still tried to give me more epidurals which is the worst thing you can do with arachnoiditis
Hi, Theodora. New to group. We can commiserate with each other.
There are some great Arachnoiditis support groups on facebook. I belong to 3 of them and they are all great. Just put "arachnoiditis" in the fb people search bar
my daughter is in same place!! we live in north carolina. we have been told to go to Johns hopkins or cleveland clinic have you had any luck??
Forest Tenant is a great man, sharing his knowledge with those of us who deal with horrific pain and a total lack of response/treatment by the medical establishment. I just copied his "Arachnoiditis Handbook For Survival" . And to think that in 1975, when I had my first spinal surgery, dr. Tenant was opening his clinic...about 40 miles away from me! How different my life would have been with proper care. So it goes.
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Hi I was just diagnosed with Arachnoiditis. I'm heartbroken. I've lived in pain since I've been 34(49 now). I had surgery a few months, lost a lot of blood, had a brain aneurysm and was also diagnosed w/ cancer. My back pain was getting worse, I was getting so bad I was having a hard time just getting up on the table for my cancer treatments. Now I just have spasms that are crazy. The MRI showed Arachnoiditis and a 3x7.8cm seroma. Who can I go to? My surgeon is blowing me off. My pain doctor said a pain pump will give me releif. Should I go to mayo. Do they treat this? Thanks everyone. Sorry you all suffer too.