Hi Buster brown I am Joan. I started with arachnoiditis in (probably 1994), but was diagnosed with a discogram in 1999 after a failed back fusion. I had gone to Hershey Medical Center and was told it was one of the most painful conditions there is and when my husband was alive, he was tested at Thomas Jefferson in Phila, PA (he didn't have it thank goodness) and was told the same.There is no cure. The spinal nerves are full of scar tissue and you can not "mess" around with them.
More info is on the internet of causes, such as epidurals, spinal taps, viral infections, myelograms with certain dyes, FAILED back surgeries, certain medications placed in the spine, i,e. It is a very painful condition. Usually a "big", medical center that trains physicians with an "acute" and "chronic" pain center knows all about this. Best of luck. I will have NO ONE mess with my spine where arachnoiditis is. No SPINAL TAPS, NO MEDICINE PUMPS there (one dr stated he wanted to place one where the scarring was...no way!),
Sometime pain patches on the skin work well besides oral medications. Even some medications you can rub on like Voltaren gel as an adjunct. There is no cure sadly but since I first was diagnosed, they have been many more discoveries of causes and trials in treatments. Pray you find relief!

I've had arachnoiditis since 2012. It has been a tough fight and doctors that have any idea how to help are almost impossible to find. I finally found a doctor that wasn't just saying they knew what the disease was. He actually does. He implanted a pain stimulator which is helping quite a bit. He's in Tennessee so not real close to your location. Do not let a bad doctor implant a pain pump. They are only making money off of you and not trying to help That isn't for our disease. I hope that helps.

@colleenyoung Hi Ms. Young! I was searching for a dr./specialist in my area that specializes in Arachnoiditis and just saw your replies above. Can you please help me find someone near Hickory, NC? Thanks so much!!

Hi, I too am looking for a specialist who understands and is very knowledgeable about Arachnoiditis which I have had for decades, I live in Fond du Lac Wisconsin. I do not know why it is hard to find excellent help for it. I had a head on collision on Easter Sunday which I believe has been the cause of my Arachnoiditis to go into over drive and no one seems to know how to help me. No one can really understand how horrible this disease is; I can not sit down without extreme pain. Any one who knows a physician outside of the Agnesian Health Care system please let me know.

@bfsecurityguy, I'm just wondering if you've found a Dr. In your area to treat you. I believe I may have arachnoiditis also, and need someone who can treat this.

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.

Welcome to Connect @charmyachicago.

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.

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.

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