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Arachnoiditis: Trying to find a specialist

Spine Health | Last Active: Nov 30 4:16pm | Replies (326)
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@ledgerwp

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

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Replies to "I too have Arachnoiditis and have had some pretty bad experiences with doctors not believing in..."
Colleen Young, Connect Director | @colleenyoung | Jan 23, 2020

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?

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Pam | @ledgerwp | Jan 23, 2020

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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jelizabeth | @jelizabeth | Jan 23, 2020

I ended up with cauda equina syndrome and arachnoiditis after a botched L5-S1 laminectomy. On top of all the severe nerve pain, and lower extremity weakness and atrophy, I had to endure so much unethical and biased behavior from the medical field in East TN. The surgeon said I did not have cauda equina syndrome and it took seven years for me to find a neurosurgeon in NC that would diagnose the conditions in, however, I still do not have a pain management doctor that understands enough about the problems to help me. He prescribes high doses of opioids, which are not helping. Most of my pain is in the rectal area due to the surgeon putting a screw in the sacral nerve root. Did you ever find a doctor to help you?

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