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msaliceinpain (@msaliceinpain)

Arachnoiditis: Trying to find a specialist

Spine Health | Last Active: Nov 14 8:43am | Replies (267)

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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.

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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 Theodora, I am excited to read you have a doctor in Chicago because I am in a suburb of Chicago, but then you say you are in pain all the time. Does Dr. Lubenow understand this disease we have Arachnoiditis and that we are truly in pain and would never want anyone sticking any injections in our spinal cord? I am in dire need of a pain management Doctor and miraculously I checked and Dr. Lubenow is on my insurance!!! Does he have problems giving pain meds because I know they are cracking down on these doctors giving narcotic pain meds because of the major drug addiction problem we have in this country. But “we” the ones who truly are in unbearable pain at times and some all of the time need meds just to be able to function somewhat. So I guess I’m asking if you recommend your doctor for another Arachnoiditis sufferer? I am on a Facebook support group Arachnoiditis Everyday that can be helpful with the emotional support and education on this disease, might be good for you to check it out. Any feedback would be much appreciated. Thanks and I wish you less painful days.

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 3×7.8cm 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.

Hello @lconroy

I am sorry to hear of your multiple diagnoses. It sounds like you have a lot of concerns and your back pain seems to be adding to your stress. It appears as if this is your first post on Mayo Connect, so let me welcome you!

We are glad that you posted about this rare condition of Arachnoiditis. I “googled” the term and came up with the following information from the Rare Dieseases website, https://rarediseases.org/rare-diseases/arachnoiditis/. I also have a rare disease, neuroendocrine tumors (rare form of malignancy) and I know that the lack of information can be frustrating indeed.

Mayo Clinic Connect also has a discussion of others with arachnoid cysts, here is the link to that conversation, https://connect.mayoclinic.org/discussion/arachnoid-cyst/?pg=1#comment-70720. I would also like to direct you to a Mayo Connect group that discusses chronic pain, https://connect.mayoclinic.org/discussion/welcome-please-introduce-yourself-welcome-to-the-new-chronic-pain-group-im/?pg=96#comment-68337. Many of the people who have posted in these discussions have developed some coping strategies, perhaps it will help you to find a way to cope as well.

We have a number of very supportive people who deal with chronic pain on a regular basis. I would like to invite @jimhd and @johnbishop into this conversation as well. They are both volunteer mentors with Mayo Connect and I know they have had severe problems with chronic pain as well.

From reading about Arachnoiditis it sounds as if there is no surgical cure, but that physical therapy is helpful for many people. Have you had any PT so far? What have your doctors recommended to help you deal with the pain?


Hello @lconroy, I also would like to welcome you to Connect. Teresa (@hopeful33250) has given you some good information and links to get you started until others join the discussion. One of the best things you can do for yourself is to learn as much as you can about your health condition/diagnosis. You really have to be your own advocate and you can do that by educating yourself on every aspect of your condition. It will help you ask the doctor better questions and hopefully help them help you.

I’m sorry you are in so much pain and it’s getting worse. My lower back pain doesn’t sound as bad as yours and I wished I had a better answer for you. I have lower back pain/stiffness caused by degenerative disc disease and I also am in my second occurrence of polymyalgia rheumatica which I’m tapering off of prednisone for the pain in my shoulders, arms and hands. There are days that it’s really bad and then just days that it’s just there. I find that I try not to focus on the pain but get my mind thinking about something else and taking one day at a time helps get me by the tough times.


Hi, @lconroy

I’m sorry that so many people live with intense chronic pain, and that you’re one of them. I have lower back pain, but not constantly, from falling 12′ and landing in a sitting position, with my back against a concrete wall. The chronic pain that I struggle with is in my feet – peripheral neuropathy. I recently had a spinal cord stimulator implant, and many days the pain is 80% better than before. I think the stimulator is largely used for back pain. I wonder if it might be an option for you. I’ve cut the dosage of morphine sulfate in half, and take only a third of what I was taking of Cymbalta. I hope that in your research you’ll find some answers.


Hi Jim,
I’m so sorry you walk(no pun) the path of chronic pain also. I’m just having a real hard time, physically and emotionally with it all. I’ve been fighting it since I was 34(2003), and they kept telling me I was going to get better.. each painful surgery. This last one I knew I shouldn’t have gotten my hopes up, it sealed the deal… permanent damage and I’m in more pain than I think my brain can accept most days. Thanks for reading this. I really appreciate you hearing me out, I’m sure I’ll get better, mentally, it’s just kinda new, this big sucker punch. I’m also glad to hear the SCS helps you. How long have you had it? my pain is mainly very low(sacral), pelvic area, back of my thighs and down to my feet.. Does it help with that? They are offering a pain pump now. Do you think one over the other is more beneficial? Pros vs cons.
Again, I’m sorry you’re in this position. Thank you for sharing your knowledge. Take care.

Hi John,
I’m so sorry you’re in pain too. Whether yours is or isn’t as bad as mine doesn’t matter, to you it’s affecting your life and causing pain, so that’s the issue. I’m so sorry. People tend to forget that. I was in unbearable pain the other day and was on the way to my cancer treatment, I was literally think I could jump out the car door on the X-way and it would be all over. Don’t worry, is never cause others that kind of trauma, it’s just sometimes you can’t handle that kind of pain, and sitting in the car for an hour was more than I could bear. As we pulled in the hospital a worker passed by with a limp, my relative said to me, “see look how bad that poor person has it, they’re limping and they work. You just never know how much worse you could get”. I held in my tears thinking, maybe they are not in any pain at all? We just don’t know anyone’s story. I’m very stoic, had to be growing up(can tell by that comment). I just am getting to my ropes end.
I do know about polymyalgia, my friends spouse has it. I’m sorry. So many people suffer from so many diseases people know very little about. They were very blessed to have at least found a surrogate to carry their child.

My worst thing is no one cares enough to think all back issues are not the same. I’ve been damaged severely. My CSF was leaking out. My dura in that area was actually burned away, they had to create a new one w/ fat/fascia/stem cells and sew it on. The spinal headaches for 2 weeks were so horrid I couldn’t move. Now to know there’s blockage in my spine that won’t allow the CSF to flow freely is mine blowing. Arachnoiditis..on top of it all? I’ve haven’t accepted this yet. All they can to is offer drugs(yuk) or a pain pump. I suppose I’m so tired of meds the pain pump will be a relief.
Thanks for listening. I’m still in shock over it all. Bless you and please keep in touch lconroy826. I pray for us all. I hope someone listens.

Hi Teresa,
I’m so incredibly sorry you have pain that stems from a rare disease/disorder. It seems people can relate to a cold better than empathizing with chronic rare disorders. I have some that have stuck around but most either bail, or make comments like, “oh God will heal you if you believe enough”, or “ive just never heard of that, you seem to have these weird problems, maybe you’re just looking for diseases”. I’m not sure somedays what’s more painful?
I’ve been stuck in this horrid rollercoaster now for 12-13 years. Each specialist promised a new cure and with that came a new painful surgery. This last one got me a brain aneurysm, 2 weeks in the ICU and a permanent severe condition called Arachnoiditis. The pain from my waist down is just hard to breath. My spinal fluid no longer can flow freely. My daughter bailed, it was too much for her and me, I just am broken, physically and spiritually. I was hoping MC had something new, cutting edge to help. I guess not:(
I do wish you well, and the best. Contact me anytime. Hugs

Hi @lconroy

I don’t have any experience with a pain pump, but the scs has been a great help to me. I’m pretty sure it’s only intended to treat nerve pain, which can be in just about any part of the body.

I’ve been treated for major depression and other mental health issues for almost 15 years now, and I’ve learned that pain and depression tend to make each other worse. More pain, deeper depression. More pain, more anxiety. More pain, more suicidal thoughts. Mix all those things together, and they seem to rise together, like a ball of bread dough.

That’s just my own experience.


Hello @lconroy

Yes, I’ve had friends who pontificate about the fact that sometimes people are looking for attention when they talk about their health problems. It is for that reason that I started a support group in my church called, Living & Thriving. We have lots of members whose kids, spouses, etc. are tired of hearing them talk about their health problems – but our group is very supportive and we are there for each other. I hope that you are able to find some support for yourself here at Mayo Connect as well as one-on-one support in your community.

Have you called your local hospital to see if they have support groups for people who deal with chronic pain?


Makes sense. I actually never talk to my friends about my health… which is a problem. They never understand why I cancel all the time. I’m sure they know I have issues and just went through cancer, but to tell them everything… heck I’d glaze over. Thanks for the idea of going local. I appreciate it! Be well, as you can and keep fighting the good fight.

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