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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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I too have Arachnoiditis and have had some pretty bad experiences with doctors not believing in the disease. I had a pain pump put in in 2014 with mistakes made and complications. I also have cauda equana which is even harder to get a doctor to believe. I'm in big trouble now since my doctor kicked a lot of us out so I have a pain pump which is close to the time for filling. If anyone knows of an Arachnoiditis doctor that cares enough to find solutions for me, please let me know. I stay so depressed and that's not me. I live in Alabama but will travel anywhere just to get help. Thanks
Welcome to Connect @ledgerwp.
You may also want to connect with @user_ch3fc240e who recently wrote about a brother with Cauda Equina Syndrome https://connect.mayoclinic.org/discussion/cauda-equina-syndrome/
How does a doctor "kick out" patients? Is there a pain clinic in your area?
It was a pain clinic. I had been going to them for 15 years. Things changed after pain pump was implanted ad mistakes were made. Many things happened and the final thing was refusing another back injection which is probably what caused my disease Arachnoiditis. When I said I wouldn't do it, they cut my meds in half, dropped my muscle relaxer and slowed the pump down to almost off so my pain flew up. It goes on and on. Its been a nightmare. I did find help with cauda equana from a urgent care clinic Med they gave me. It's a miracle. <br />
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By reading quite a few blogs, sounds like I need to go to California. The doctor people are discussing sounds great. I ended up with Arachnoiditis after they found an infection in my spinal fluid. I used to get back injections as often as every 2 months.
Hi, I live in Arkansas and was recently diagnosed with Arachnoiditis. I have been referred to and am seeing a doc in the interventional pain clinic here. I was wondering if anyone might point me to a doc in the 'area' that might have had some experience with this disorder.
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1 ReactionLivingwitharachnoiditis.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
Welcome to Connect @charmyachicago.
I just need to find a neurologist in Arkansas, preferably in Fayetteville, who can diagnose this ailment. I've read that it is difficult and it takes special tests.
@lconroy
Here is an article that you might find interesting, we shared it at our Living & Thriving Support Group.
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.