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AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:36 AM in Chronic Pain

I am new to spine health. I was just recently informed that I have arachnoiditis. I have had multiple low back surgeries. I am being told that this is the same as failed back surgery syndrome and also that this has nothing to do with why I am still in so much pain. I have a spinal cord stimulator implanted but it does nothing for my pain levels. And although this is a chronic condition it does not cause any long term affects or pain. It is just nerve fibers that are bundled together. I have had limited mobility and pain in my spine for the past 2 years. I was just inquiring if anyone else has heard of this or may have the condition. I am also looking to maybe find a physican in the cleveland pittsburgh area who can possibly help me manage my unending pain.. Thank You!!!



  • I think you have been given some inaccurate information concerning arachnoiditis. First, I am very sorry to hear you have this and hope your condition is not too severe. I'm including a couple links with further information. I encourage you to learn everything you can....Have you consulted with anyone at the edited? You should be sure to find someone very qualified in dealing with arachnoiditis.




    Good luck.

    Doctors name and contact details removed by forum Moderator (paulgla). We do not permit publishing specific doctor's or institution names and contact details.
  • Thanks Gwennie I appreciate the information. I thought it sounded a bit strange. I will try the websites and also cleveland... :) Thanks again.
  • As a patient with arachnoiditis, whomever has been telling you that this is not a cause for pain probably has been taking the medicine you need.

    That's sort of joking, I guess! :)

    Heck yeah, how can it not hurt to have nerves, scar tissue, and blood vessels bundled together? This can also be a progressive condition. Sorry to report this bad news if you didn't know this.

    Did you spinal cord stim trial work? I don't understand why you have one if it doesn't work? I just received my perm Boston Scientific and while it does nothing for my back pain(and I was told it wouldn't), it helps my legs so much.

    I have been told I will be on some form of narcs for the rest of my life becuz of all my fun stuff, including the arachnoiditis. Lots of docs don't want to touch us because they don't get to see immediate results. The more surgeries and dye you have, the more likely to advance the arachnoiditis. Even more epidurals can cause more "clumping."

    Of course, this is all my own research and what I have been told by my docs. I understand that most folks with arachnoiditis will end up on SSD at some point. I am VERY happy you are finding another opinion becuz SOMEONE out there can do something to make you more comfortable.

    In reading this, I realize it looks pretty grim. I don't mean it that way. I just don't think that most people(including docs) realize how painful this is. I still enjoy my kids(tho I might have to take some extra meds to go to a game) and with my scs hope to have better quality of life. Maybe a new doc can get the rep to tune up your scs? Did you have any relief with the trial? It should never have been implanted if the trial did not give you some relief.

    Please continue to updates, I don't see many dx'd with arachnoiditis here, I'm sure there's more of us but a lot of docs dont' know or figure it doesn't matter if they add another word to our list of dx's.

  • I think you are very sweet and caring person. I thank you and no I appreciate all you have said to me. I want someone to tell me what I am in for down the road. I feel I am being shadowed and fear is a big part of me now. I know there are others out there like us. I have a long listen of back ailments. I was born with a bad spine. I had two spinal fusion surgeries for spondylolithesis L5-S1. Bilateral stenosis from L-4-S1 and also instability at L5-S1. Also DDD. I went in thinking I was only going to have one spinal fusion surgery. Lets just say no ones fault but first surgery did not work. Second back surgery at same level in the same year. My nerves were stretched where the disc was removed and they were stretched very far. I had lived in pain for the next almost 2 years. The right leg was never the same after my second back surgery. I have dragged that leg since the day I had that surgery. I was given physical therapy than pulled from physical therapy. I was than told about the stimulator after I "failed all conservative measures".... I was a very active woman in the medical administrative field before all these surgeries. Now I am on SSD... I was told longer leads were going to be placed due to my stenosis. So I could receive coverage. The right leg pain subsided with the trial and nothing worked in the back. Now 6 months later leg pain is back with a venagance and is in both legs. They tried to re-adjust my stimulator with no success. So I wait now for the only pain management specialist that would see me. I am seeking out a second opinion and I will knock every door down if I have too... I feel being silenced is wrong and generally speaking a patient has every right to know. I just found out I had this last week by reading it. Than they tell me well it is not causing your pain... You have failed back surgery syndrome. I appreciate that you still try and live your life despite this impairment. I do not know what quite to call it yet. Thanks and we will keep in touch.. They cannot silence us forever... :)
  • so wrong to not help you more! I don't think failed back surgery syndrome is actually an official diagnosis, just a description but they use it as a diagnosis. that's how it was explained to me by a neurosurgeon, anyway. keep in touch.
  • One thing I learned is that doctors do not like to put down "Failed Back Surgery Syndrome" in writing. It can make a big difference in the amount and type of treatment the patient can receive in the future. Apparently when insurance companies see that diagnosis, they will reject future authorizations, etc...or so I have been told.

    Thanks, ernurse for filling in the details. I learned about arachnoiditis almost by accident and have been terrified of developing it. It is something surgeons never talk about -- kind of like scar tissue. When I read TLee's comment about being told it could not be the source of her pain, I just about fainted.

    I am hoping that your case is mild.

    XX Gwennie
  • You have been handed one big mountain of misinformation. I see that gwennie posted some links about arachnoiditis for you. If you do an internet search , you will find many others with a lot of information, but as the nurse wrote, most of it is not good. Arachnoiditis has no "cure" and it is a progressive disease, as in the symptoms will progress and worsen in most cases over time. That may by why you are now having difficulty with both legs.
    I have it as well and only found out by asking directly whether or not I had it. I could see the nerves clumped in MRI's and CT scans, but no one bothered to tell me that the dye used in those scans, myelograms causes it. Which is why we aren't told about it.....
    Anyway, I'm glad that you got some correct information. I'm sorry that it is not better news.....and sorry that you are joining the ranks of us with it....
  • Thanks to all of you... You do not know how much what you said really means to me.. I should not say I am happy but I am releived I should say that there are others much like myself who are sharing the pain and are afraid much like myself... I will seek out a second opinion and hopefully I will be able to get some relief from someone who does care... I will try and be optimistic... Some of you have been through alot with your surgeries. Sandi I cannot beleive all you have endured as well... I see you also have spondylolithesis.. And gwennie I appreciate your sites that you gave me I did log and got some information from that... ernurse was also very caring in listening.. Thanks again... I will keep in touch... I think it feels good to know there are others out there and you do have a voice... :)
  • Good point-how do we balance diagnostics and treatment knowing it could make our condition worse???

    I remember one selective nerve root injection(already had the A word mentioned) where the injection guy(good guy) said, "You might get a funny taste in your mouth." Because of all of the clumping, the lidocaine/marcaine whatever caine and the dye had entered a blood vessel he accidentally punctured instead of the nerve root sleeve. He's a good, skilled, guy, but when you've got Franken-back to work with, stuff happens I guess? :) But I just remember thinking that this whole arachnoiditis thing that was mentioned was true since HE had difficulty.

    I really hope TLee can get some sort of relief soon. Narcs and my new SCS are helping a lot here, I hope everyone else reaches a time of acceptable relief.

  • You are truly welcome. It does help to know that there are others out there, but at the same time, it makes me mad to know that this can be caused /is caused by the dyes used in those tests. If they were to tell us outright, I don't know that I would have consented to the two myelograms that I had, or the multiple MRI's and CT scans with contrast that I had. I was led to believe it was perfectly safe and the worst "side effect" that I had to worry about was a spinal headache. I used to wonder why my early MRIs and CT scans showed the nerve floating around, and then after surgery, they seemed to all be stuck to the sides.....and when I asked about it, I was told it was due to the position they have you lay in while they do the scans.....what a bunch of malarkey that was...
    I've had my share of tough times, I won't deny that. It's sure been one heck of a rollercoaster ride...yes, I do have spondy...it can be darn painful too, and the clicking sound sometimes makes me feel as if it is going to fall right off the other vertebrae. After my revision, I am still not sure that it ever fused, but it sure doesn't feel that way.
    Take care of yourself Tlee, you know where to find us if you need to talk.....or have questions.
  • a great question ER Nurse, where do we draw the line and how do we know that those tests that we are sent for are not going to harm us in the long run?
    I trusted my surgeon and did what he told me needed to be done before my first surgery....I told him from day one that I didn't want things sugar coated or to be lied to, I wanted to know the truth about what I was facing with having surgery. I thought that he was being honest, but then again, he also never told me about CES and lied through his teeth when I told him that another surgeon that I had seen said that was what happened to me after my first surgery. He was far too busy trying to avoid a lawsuit and I think sometimes that , in their own best interests , they aren't honest with patients.
    At the time of my first surgery, if he had told me that the contrast being used for those two MRI's that he had me have , and the three CT scans, one of them being done with the myelogram could have caused arachnoiditis, I would have told him to figure out another way to find out what he wanted to know....and the 2nd myelogram afterward just added to an already damaged spinal cord that couldn't tolerate the contrast....or if the radiologist who did the injections had told me that it was a possibility I would have run far and fast. I already was petrified of the whole idea of a myelogram to begin with but there wasn't even any mention of the possibility of the contrast causing arach on the forms.....sigh.
    I don't know where that line has to be drawn but I believe that patients have the right to know about all of the adverse possibilities....then they can truly make an informed decision....
  • I was told it's a diagnosis that means you had surgery to fix the problem but it didn't relieve the pain and problemd you had before surgery.
    So sorry to here about your condition. Hope you find out more from a second opinion.
    Good luck to you!!
  • Careful here everyone. As a sufferer of Arachnoiditis, I'm fully aware of the causes. The die that is injected into your veins (i.e. arm) for contrast does not cause this problem. It's the die that is injected into the subarachnoid space that can cause a problem.

    Arachnoiditis has long been recognized as a rare complication of spinal surgery (particularly after multiple or complex surgeries) or trauma to the spine. Other similar causes include multiple lumbar punctures (especially if there is a "bloody tap" with bleeding into the spinal fluid), advanced spinal stenosis, or chronic degenerative disc disease.

    Myelograms have recently come under scrutiny as being a possible cause of this condition. A myelogram is a diagnostic test in which a radiographic contrast media (dye) is injected into the area surrounding the spinal cord and nerves. This dye is then visible on x-rays, CT, or MRI scans and used by physicians to diagnose spinal conditions. There is concern that exposure (especially repeated exposure) to some of the dyes used in myelograms may cause arachnoiditis.

    Similarly, there is concern that the preservatives found in epidural steroid injections may cause arachnoiditis, especially if the medication accidentally enters the cerebral spinal fluid. This is a very rare complication and there is no substantial proof that this will cause arachnoiditis. Nevertheless, my Doctor will not do steroid injections on me anymore because I have this condition just to be on the safe side.

    This is a serious condition, and yes it does get progressively worse over time. For some, the condition will eventually level off. I'm hoping that I become one of the lucky ones where the condition levels off.

    When putting stuff out there, please make sure that all the info is out there so as not to scare everyone. As ER indicated, this is an awful diagnosis to have.

  • On a side note, you indicate that your Doctor never told you that this may happen as result from the procedures you have had. No offense, but I'm sure you had to sign some paperwork that indicated that the procedure could cause nerve damage. Any procedure that I have ever had on my back had that clause. Arachnoiditis is a very rare complication. I guess you expect your Doctor to list everything off like they do for a prescription drug commercial. You'd be there for days while they listed every warning and complication for everything they may put in your body. This is why they give you a document to sign and read.

  • Gwennie17 wrote in reply #6:

    "One thing I learned is that doctors do not like to put down "Failed Back Surgery Syndrome" in writing. It can make a big difference in the amount and type of treatment the patient can receive in the future. Apparently when insurance companies see that diagnosis, they will reject future authorizations, etc...or so I have been told"

    More often than not, a diagnosis of FBS will be an allowance on a disability claim. Not everytime, mind you, but I'd say about 85-90 percent of the time. Of course there are variables in each disability claim to take into account. So if a patient has FBS and considers filing for Social Security disability, it would be very important to voice this to their doc and be sure he includes the diagnosis in his office notes.

    As long as there are significant limitations (which almost always exist with FBS) and documented proof (MRIs, etc) then an allowance under this condition will be likely.

  • Oh, I agree! To get disability, list those rare things like arachnoiditis and such. But insurance(at least work comp) want to write you off if they hear it(at least around here.) If I was ever to apply for disability, FBSS and Arachnoiditis would be at the top of my multipage list! LOL sorry, just kind of picturing the adjustor's face when they saw the app. hehe
  • Anyone having back surgery after 2004 should check with their surgeons to see if they used a medical device called Infuse Bone Graft. A side effect of using this device is arachnoiditis.
  • I got mine first round, but I think having letters from each dr; pcp,pm and nerosurgeon helped. They listed failed surgery syndrome along with everything else going on. Along with my med records. It helped them decide, and gave there drs something to look at other than just records and coming to their on conclusions. They don't know me and my drs were very supportive and educated bout ME and my problems. So it helped and I got it in 3 months. How can they argue with what my drs do know? Hmmm, they can't!
    Good luck, sorry you're having problems.
    Try to have a good day and weekend!
    I'll remember you in my prayers!
  • Hi TLee, I don't have arachnoiditis just epidural fibrosis, but I also found out about my post laminectomy syndrome AKA failed back surgery syndrome by reading about it too. I also worried about having the door slammed shut as far as treatment options by insurance companies or whomever.

    I've got to a point where I lay down all the time and it's hard to walk around, even inside my home and I use a cane because one leg is so weak due to nerve damage.

    Anyway, this is a complicated matter and we're trying hard to understand everything and get a grasp of what it all entails. Thankfully I was already on SSDI because no way could I earn a living how I am. My heart does go out to all of you who have arachnoiditis and I hope one day a new treatment will come around to cure it or at least make it better.
  • Dave,
    Unless you were sitting with me the day that I signed the papers for the myelograms, which are the only ones that I had to sign for any procedure, you are making assumptions about what those papers said.
    Nerve damage, even if it was listed, is not the same as telling someone that this "test" they are about to give you can/may cause those spinal nerves to stick together like overcooked spaghetti, and cause you decades of increasing pain and debility.
    Most LAY people don't make a connection between nerve damage and something as "rare" as arachnoiditis. I had never even heard of it, let alone knew that it was a possibility, however "remote".
    I do expect my doctors to relay important information to me and yes, that does include "complications" that may or can arise. Doctors/Radiologists in particular are well aware that arachnoiditis is reported to be caused by the contrast used in myelograms. Omnipaque, omniscan and several other ones currently being used all have been linked. As were the ones used previously. A spinal headache is also supposed to be a "rare" occurrence in myelograms, yet that is discussed.....
    But thanks for your post. I'm glad that you are content with the information provided to you prior to any tests that you may have had. I can only wish that mine had been the same.
  • Have you noticed that when you're about to have a procedure done that you're rushed through signing all that paperwork? Most times I honestly am not given a chance to go over it like I'd like to.
  • Over 25 yrs. ago, myelograms were performed using a contrast agent that was oil-based, and this material would clump in the spinal canal. Indeed, it can still occasionally be seen in elderly patients who had a myelogram many years ago. This contrast agent can cause chemical irritation of the nerve roots, or a chemical arachnoiditis.

    However, the contrast agents now used are water-soluble and do not induce this chemical reaction. They are eliminated from the spinal canal and the body w/in hours of the injection. The remaining risk of arachnoiditis from myelography is essentially the risk from the needle puncture. While no procedure is risk-free, arachnoiditis is exceedingly rare after myelography today. The most common risks are local bleeding at the skin, a small amount of bleeding into the space around the spinal canal (epidural hematoma of the spine), direct nerve root injection from either the lidocaine or contrast causing nerve root damage (often but not always temporary), infection either at the skin or in the epidural space (rare but serious), and the very commonly reported spinal headache, which occurs when the puncture site continues to leak fluid. Spinal headaches are easily treatable with a small blood patch injected at the puncture site. Another type of headache can occur just after the myelogram if the patient is allowed to lie flat or with the head down. The contrast tracks up into the head, causing a pretty quick, pretty severe headache, but no permanent problem.

    Arachnoiditis is so rare after myelography today that I couldn't find an article quoting a number. However, once something occurs after a medical procedure, it is forever documented as a risk, regardless of the rarity. The fact that no one mentioned it is probably because they don't deem it to be a risk. No one ever specifically said I could contract this condition. If you read about Arachnoiditis, in layman's terms, its nerve damage.

    I would suspect your spinal surgeries as a cause for your Arachnoiditis rather than the myelogram. I'm not sure how a Doctor would determine if you have chemically induced or trauma induced Arachnoiditis

    Just a thought.

  • ---this is on my surgical reports as well, but not in any of my diagnostics....at what time do you worry about scarring encroaching into the spinal nerves?...seems to me that the dura layer is a very thin membrane, and that it would not take very much for the scarring to cross that and affect the spinal nerves (or any others). my point being, that if they admit to one, why not admit to the other?
  • EP being a cop out diagnosis is your opinion and I understand that but don't put it in a way that others might misunderstand this, since this is a complicated matter. As for me, in my case, the scar tissue is symptomatic and clearly evident to be causing pain and is confirmed by an MRI and ct myelogram. This is a real condition and I feel that it can be proven to be one of the culprits generating pain in certain people like myself and others. I also know that it's also a normal occurrence post surgically and I'm glad that it doesn't always mean it will be a problem.
  • sunny1966ssunny1966 VIRGINIAPosts: 1,385
    In my opinion, for what it's worth. I had a myelogram 1/21 for neck issues. I'd never had any lbp. As soon as the dye was injected I had terrible pain in lower back and butt. It's now 8 months later and I still suffer with this pain e-v-e-r-y day. I had a lumbar mri that only showed tarlov cysts in sacral spinal canal and the doctor says they don't cause pain?? Okay, my mri was otherwise 'perfect'. What do you think is causing this pain? I read up on tarlov cysts and it says they can be caused by trauma or injury to the spinal column or increased csf pressure. Could injecting the dye not cause an increase of csf? I have not tried to blame anyone for this because I did sign the papers that I'm sure somewhere said something about this. Not that I saw or not that anyone mentioned to me not even about nerve damage but I'm sure it was on something I signed. All I know is that it really stinks having to live with the after effects whatever they are. It's great on top of all the cervical issues. Ah, it could be worse. Right?
  • Maybe?
    dave said:

    direct nerve root injection from either the lidocaine or contrast causing nerve root damage (often but not always temporary)
  • You seem to be an intelligent person and you do know your info. Perhaps you can reply in a kinder manner if we make a tiny mistake? Nobody is perfect and we all learn something from one another. If something is not quite correct, it can be pointed out in a gentle way. I'm talking about the contrast dye business in case you are wondering. Surely you don't want to come off as being pretentious.
  • I wasn't trying to be pretentious. Just stating facts. I have a tendency to be rather direct, guess I could give Michael a good run for his money. I just didn't want to see everyone going "I have epidural fibrosis, therefore that's my problem".

  • Essentially, you have just made my point. I did not say Epidural Fibrosis is not a contributing cause:
    dave said:

    The back and/or leg pain is thought to be the binding of the lumbar nerve root by fibrous adhesions.
    Let me ask you, do people receive a diagnosis of bone spurs or stenosis? A bone spur in and of itself means nothing, the location of it can cause extreme pain. In my opinion, the diagnosis should be something like stenosis caused by epidural fibrosis. Of course you can fill in a more technical medical jargon to fill out my argument.

  • The formation of scar tissue (epidural fibrosis) near the nerve root is a common occurrence after any back surgery. It occurs in everyone that has surgery, even those with favorable outcomes. For this reason, the importance of scar tissue (epidural fibrosis) as a potential cause of postoperative pain is controversial.

    Scar tissue formation is part of the normal healing process after a spine surgery. It can be the cause of back pain or leg pain. Scar tissue is rarely painful since the tissue contains no nerve endings. The back and/or leg pain is thought to be the binding of the lumbar nerve root by fibrous adhesions.

    To make this an actual diagnosis is a cop out in my opinion. It's similar to throwing out the general term of Neuropathy or Radiculopathy without indicating the actual cause.

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