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Anyone with Arachnoiditis in lower back?

I am a 58 year old woman with fibromyalgia and degenrative disc disease of the lower lumbar region.  I had an MRI done 2 years ago and it indicated that there was buldging of the discs at L5-S-1 and also intrathecal nerve root clumping suggesting a "possible" prior episode of Arachnoiditis.  I've seen a Neurologist who did not confirm a diagnosis.  I continue to have back pain everyday, and most times it is bareable.  But, from time to time I end up in the ER with unrelenting back pain that does not respond to pain meds or muscle relaxers.  When I have this pain, I literally cannot move and can barely walk, let alone take in a breath.  ER usually gives me a shot of morphine and some anti-inflammatories and send me on my way with a diagnosis of severe back pain.  I know that there is no cure for arachnoiditis, but I'd really like to know if this is what is causing my problem.  Anyone out there know if just the MRI confirms a diagnosis or are there other tests?  What type of doctor can confirm it?
23 Responses
Avatar universal
I, also, was diagnosed TODAY with Arachnoiditis.  My Neurologist stated that was nothing more that he could do for me and was sending my diagnosis along with his recommendations right away to my Pain Management Doctor, stating it would be there by the time I arrived there today.  He stated that the only thing left for me was a pain pump (which he is going to recommend) or a Nerve Stimulator.  I asked him what happened it these two modes didn't work, and he stated that Pain Management would be there for me.  As he walked me out to the lobby, he apologized for not being able to help me and stated that he hated giving people this kind of diagnosis.  He also stated that if I ever needed someone to talk to or was confused about any treatments, etc. to give him a call.

At the time, his comments went right over my head and I didn't quite get his drifts until I was driving back to work.  I just thought he was being extremely nice.  But when I got back to work and looked it up on the Internet, Iwas stunned.  I had no idea.  What scares me is that I have so much scar tissue from my 2 level fusion in Dec, 2005, that he could not get the contrast in my spinal cord during the Myelogram, even after he waited for quite a while (I don't understand this part, but it must have been important to mention it).

Anyways, I'm scared . . . . I'm a healthy, young 55 year old.  I didn't see this coming.  I have always been VERY optimistic and never felt I wasn't going to get better . . . it was just going to take time.

Can anybody give me any information on this and what I can expect now and in later years????  What I have read to date doesn't really say much except that it can paralize you.

Any information would be greatly appreciated!
Avatar universal
I, too, suffer with Arachnoditis. I was given the news, about three years ago. I have had four back surgerys. The first simple disc ectomy, which herniated the 3rd day, which lead to the second surgery. Then, a third one was a fusion. However, screws broke, within about 3 months, for no known reason!! Can you imagine? Which lead to a very invasive 4th surgery. All of this since 2001.

I don't mean to be the bug in the soup. But I have studied, read and asked tons of question to many, with the same answer of nothing to be done, except to manage the pain. I am 41 and a single mom, of three. I will not have the pump or stimulator put in, at this time, because I just don't want to be cut on, again. I have heard good and bad from it. But, that can go for anything.

I do not have a day without pain and take pain medicine daily. And, yes, there are days, even a week, I can't or barely can get out of bed, but I don't stop living. I am totally disabled and do not work, any longer, but I do my very best to stay busy, at home. I have a garden, flowers and, on occasion, I take a four wheeler ride, with my little girl. I do what I want, when I am able. Only thing I have to remember is what I will have to deal with, for days to come. If I have a good day in the garden, then I can plan for 3-4 bad days or in bed. Same goes for anything else I do, but I want let it have complete control of my life. It has taken enough away from me.

So, on your good days, enjoy life to the fullest and learn to appreciate those moments. I never realized what I took for granted, like bending and lifting a pot, from the cabinet, to cook supper, for my family. Now, I love when I am able to. Learn to embrace your life.

There are days I am afraid I will not be able to care for myself or my children, but I only allow myself a short time of feeling sorry or worry!! Because, like this evening, my oldest daughter is in her High School Pageant and I am so thankful to be able to go! That is why I can't allow myself to long to worry, because then I would be waisting good time.

I wish I could have given everyone who suffers with this dreadful thing a wonderful cure, but I can't. All I can say is it really comes down to how we handle it in our minds. I hope I have given someone encouragement that our lives are not over and we still have living to do. Just don't give up hope, there is always a chance for a cure or miracle.

Avatar universal
Dear Kimberly:

You sound SO upbeat!  I have had a great attitude about all of this until I got my diagnosis.  Now I worry about what tomorrow will bring.  I'm still working, although when I went to Pain Management on Friday, she questioned why I was.  The thing is, I can't afford not to.  And I don't even know where to start about getting disability.  From what I have read on the Internet, it's not an easy thing to get.  I asked at Pain Management what steps I would take to get this started, and she didn't have a clue.  Anyways, you sound SO much like me as I do appreciate my good days, and I try to keep a good attitude about the bad days.  My problem now is that I'm having more bad days than good days as time goes along.

I want to thank you so much for sharing with me how you are handling this dreaded disease.  I have no one to talk to about this, which was the same when I had my 2-level fusion.  I met all kind of people with a 1 level fusion, but none with a 2-level.  And most of the people with a 1 level fusion had healed nicely and were almost like new.

If there's anyone out there that could advise what steps I need to look at to claim disability, I'd surely appreciate it!

And I'll keep you in my prayers, Kimberly.

Avatar universal
It is strange how things can be. Today was a bad day. I had to reread my words. LOL!! But, hearing from you and hearing the appreciation made it better. Sometimes, dealing with the mental issue, of all of this, is just as bad, as the physical pain. It is hard, for people, to understand what one goes through with chronic pain that is not visible. Nothing on the outside shows. Put on a big smile and no one would even know there was anything going on inside.

But, life goes on. My children are home, from school, and they are my inspiration.

As for disability. I was very lucky. My doctor immediately claimed I would be disabled, with the arachnoditis. I called my local social security office and had them send papers to fill out. That is what is the hardest. I, also, believe you can order them online.

When you start, keep a copy of EVERYTHING! Get you a big box. You will have to fill out tons of paperwork. I think this is where people get discouraged. Most people I know have to appeal, but I was so fortunate. I went before a board that included a doctor, nurse, whatever you call the kind of person to see what type of work you could possibly do or continue doing, judge type person and couple of others. They heard my case. I had every pc of paper the doctors and hospital could provide and was granted my disability, on the spot. I sat for over two hours. I think the squirming trying to stay comfortable helped. HAHa!!

If you have a doctor sign saying you are disabled, all you have left is the paperwork.

Look on spineuniverse.com at what they say about arachnoditis. It states it is disabling and nothing can be done about it, but learning to keep control of the pain. Find as much info and print out and send with application alone with your doctors diagnosis.

Also, be careful with the pain meds. They are so addicting. I hate when I am told you are not addicted, however, your body becomes depended, on them, for a certain quaility of life. Well, that is bull. You body becomes addicted. Learn your medication and what it does to your body, in the long run. Something that may make you feel better now may have worse side affects, later. As for me, I plan on watching my children marry and have children. Find a pain management doctor who cares for you, mind, body and spirit. I had a horrible experience, with my first one. It makes all the difference when you have someone who cares and is not just there for the money and hauls you in and out like a herd of cows, through some shoot, at a sale.

I never have great days, anymore, but I do have good ones. I try to do something productive everyday. To someone else it may not seem like much, but sometimes just getting out, for a walk, can be a blessing. I slipped on my waterhose this morning, trying to spray off the carport and thought someone had stuck a hot steel rod through me and down my legs. I spent about an hour crying in bed and decided my nose being stopped up was not helping. So, I get up one more time!!!

It would be nice to keep in touch, not to have someone to complain to, but who understands. If you would like to chat sometimes my IM is sleeplessbrunette and email is ***@****. I'm not sure if I am suppose to give that out on here, but I just did. Oh well.

Hope to hear back from you,

Avatar universal
I have just been diagnosis with Arachnoiditis about 1 month ago. I am having a hard time to find a Dr. to see me so I just live with it. I am now waiting for another Dr. to see me from John Hopskins in Balitimore Md. I have been reading a lot and what I read I don't like. They put me off work but I am bond and determine to go back to work know matter how bad it hurts. But from what I read that might not be an option. I am 57 and had 5 back surgies and all of those shots that they give you back then 25 years ago for pain. I had know problem with my back until last Nov when I triped over some wheels on a tray at work. I somehow tristed my back and it has been down hill sense. I can't see how that can get this whole thing started but I am not a Dr. Just need to know what I am up against and what to expect. Nice to see there are more out there with this problem at least someone to talk to when things get bad.
  Thanks for listening RoxyL
Avatar universal
Good Morning Roxy,

You are in for lots of pain. No use pretending all is going to be easy, because it is not. I am not one to sugar coat things. I want the truth, so it can be dealt with. I would like to say it is like a bed of roses. There is beauty around, but with thorns. It is all in how we handle and take care of it.

I, too, have had multiple surg, with the shots, tests and so on. All of it forms this scar tissue around your arachnoid something lining...And, in all I have read there is no cure and not much that can be done. But, don't ever give up hope.

I haven't tried the pain med pump or spinal stimulartor. I'm 41 and just hate to be cut on, again. I have heard great things about both, as well, bad. I think it just depends on the individual person. I take pain and depression meds everyday. I try to keep my pain down, without being dopped up, and do what I want when I am able. I usually have to pay for it, but I have found for my own peace of mind, I have to go on. I was given a suggestion from a med student, on this forum, to look into cranial osteopathy. I have never heard of it, but getting info. I want to keep trying. He/She said they would get back, with other info. They just might be our little internet angel.

Not to say, I haven't spent my number of days laying, in bed, crying. And, yes, feeling sorry for myself and family. But, it doesn't do me or them any good. Sometimes, I have to really watch myself not to allow the darn depression to take over. Life goes on. I do better to focus on the good things in life and we all have something good. My children are my inspiration. They give me my will to keep moving. Find yours!!

I have found useful info on spineuniverse.com.

Know you are not alone in this and you are not crazy! What you are feeling is real!!

Hope you have a Happy Easter,
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