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.

Hi @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?

Hi Tbato,
I'm so glad you responded. Did you see that a new member joined Connect? @JeyLei posted a message here https://connect.mayoclinic.org/discussion/no-where-to-turn-for-answers-this-is-the-story-of-my/ Recent test results show that his wife has an arachnoid cyst.

I think he would appreciate having someone to talk to. Would you please consider clicking the link above and writing him a message?
Thanks
Colleen

Hi... I to suffer with Arachnoiditis. I have had it for close to 26 yrs now.. I run an Arachnoiditis group on FB if any of you would like to join for info and support.

Hi @d_corley43
Welcome to Connect. I'm sure @Tbato622 will be happy to share with someone who has been living with this condition. Have you had Arachnoiditis since you were a child?

Hi 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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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?

Possible Clue........While researching myelograms I came across 'arachnoiditis' for the first time.

Now a few years back I had a series of (3) epidural steroid injections as treatment for pain caused by fused C4-5 vertebrates having "came loose". Very shortly afterward I began to live in constant pain like I never had experienced....never knowing why but thinking it was nerve damage. Two EMG's and both came back negative.

Today I read two articles, one on WebMD and the other on Spine Universe (this site does not allow me to post links - I may try again in a few days time). Each states "....there is a concern that preservatives found in epidural steroid injections may cause arachnoiditis." Arachnoiditis may in part, full, or not at all be my condition but the information in these articles so closely mirror my symptoms and struggles it's scary. So I'm on a journey now, to see IF it is probable the epidural steroid injections I received contained preservatives and the possibility this caused my condition.

I hope this information will be useful to you in some way and I hope you find significant relief. I will post any findings.

Find an intractable pain doctor for palliative support

This isn't going to be much help, I'm afraid. I don't have arachnoiditis, but I do have Primary Systemic AL Amyloidosis. Finding a doctor within a thousand miles who treats it, and wants to treat it, is nearly impossible. Actually, at my age, 77, having a diagnosis is really only a more realistic life-span prognosis, even with the new meds and procedures. But getting a Medicare-accepted diagnosis is almost impossible. The Bindings sFLC assay,which is said to be 100% sensitive and accurate, is good only if one can find a doctor to work with Mayo, get Mayo to work with that doctor, and get Medicare to accept that procedure. And about pain. All the local docs want to do about pain is get you hooked on MM. I think they grow the stuff in their desk-top greenhouses.