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Adhesive Arachnoiditis

attheinletattheinlet Posts: 32
I was diagnosed by two doctors off of an MRI of having nerve root clumping. I was told it is Adhesive Arachnoiditis. A third doctor told me I had Adhesive Arachnoiditis from examination and observation. The confirmed diagnosis was in Feb 2014. I can barely walk. I walk 0.3 miles in 30 minutes daily. Anymore than that and my multiple opioids can't even handle the severe pain. I am unable to sit for more than 15 minutes and even there, it increases the pain. I live a miserable life, often wonder if it is worth living. The only modalities of daily living I can do is dressing myself, going to the restroom and the walk which causes greater breakthrough pain.

Why don't doctors make it clear that if they happen to pierce the dura you can get far worse than a bad headache, this is also how you get adhesive arachnoiditis. This awful disease is iatrogenic, caused by the manner or treatment of a doctor. Epidural steroid injections have been one of these to cause arachnoiditis. This is an off label use of the steroids. It is not an FDA approved use injecting into the epidural. The drugs themselves are labeled as not for epidural use, yet I have never been told this. Today they had a live talk on Spine-Health.com on a 'revolutionary procedure' which I missed but I did see the charts and they mention the possibility of puncturing the dura but once again the only risk they have on the chart is a bad headache. When adhesive arachnoiditis is a very likely risk of piercing the dura. This site has a lot of rules to remember which makes it hard to truly communicate with one another. Their are many people who know they have this disease and many that the doctors and radiologists won't diagnose in my opinion and others, even doctors, I had read saying the same thing because it is iatrogenic. Think of the blue wall in police groups. I believe it is a big white wall that doctors don't want to blame others and testify against others.

Well I have done enough talking, I am trying to find out if there are any support groups for this incurable disease. Does anyone know of support groups specifically for Adhesive Arachnoiditis?


  • by the use of steroids into the thecal sac. It can also be caused or was by the use of certain dyes no longer used for myelograms. Those dyes are no longer in use.
    I was diagnosed with arachnoiditis some years ago now, and it was not mentioned on any MRI report until I asked why the nerves were so clumped to the sides of the dura on some images.....
    When I asked about it, I was told that yes I have it.
    As far as groups go, my best suggestion would be to do a search on the internet for support groups for arachnoiditis. I know that there used to be a few of them.
    As far as ongoing treatment, there have been successes in managing the pain by using spinal cord stimulators in patients with arach.
  • attheinletattheinlet Posts: 32
    edited 08/22/2014 - 3:07 PM
    Unfortunately, even the myleograms of today with metrizamide can also cause arachnoiditis. From the textbooks written on Arachnoiditis, surgery itself can cause arachnoiditis. I just can't imagine how many people with "failed back syndrome" really have arachnoiditis. It can actually lay dormant in your body and a mild action, for me a PT exercise actually triggered it.

    I meant no offense about all the rules but when you are on the narcotics I am and in the pain I am in, it is hard to remember a lot of rules when you just want to communicate with people who suffer as you do, who struggle with life and death options. Here I was sent a note from a moderator on the rules after my first posting. I had read the rules and I don't believe I violated them. But nonetheless, it left me wondering when, where to post, you can't mention Dr's who worked on you, good or bad, hospitals. These are things that people are looking for. So, yes, I appreciate that you are trying to provide ways to communicate but it seems quite restrictive. I guess your worst penalty is someone removes it and throws one out.

    I have a spinal cord and peripheral nerve stiimulator in me. I am trying to get them removed but the doctor I found won't do it unless I get a morphine pump implanted first. The Arachnoiditis Foundation has found that neither of these modalities work or work for very long. I had mine implanted in Sept 2013, By December 2013 I knew it didn't work at all. Unfortunately the tests were false positives. The pain is caused by exercising, so while having the tests they made me stop PT. It turns out that the stopping of PT is what decreased the pain. Doctors have me limited to isometrics laying in bed, pool as tolerated. I can walk in pain in the pool but not for more than 10 minutes. I force myself to walk with a walker with most of the weight on my arms for 30 minutes. The exercise is what requires the breakthrough meds but if I do nothing my muscles desinegrate even faster.

    Thanks for the response, I hope your arachnoiditis hasn't taken your life like it has taken mine.Best of luck.
  • My husband has been going to the same doctor for his pain medication since two years after his back surgery in 2010. Since he had started feeling worse, getting weaker and having a lot of new pains in various places, especially his legs, buttocks, and feet, the doctor wanted a new MRI. After having the MRI in December 2013, the radiologist diagnosed Adhesive Arachnoiditis. Even after that diagnosis and everything I read and told his doctor about not having anymore spinal injections or procedure, his doctor referred him to a neurosurgeon, who immediately wanted him to have a CT Myelogram. The members of the support group I have spoken to, kept telling me that test was not a good idea and could make the condition worse. My husband has been in so much pain, he asked his doctor for more pain medication for the third time and just received a letter this week he is terminated and will no longer be treated by this doctor for narcotic misuse. Really! They know how much pain he is having and there is nothing else that will relieve the pain that he's tried. He can't even find a new doctor right now because we were paying cash and haven't found any other doctors that accept cash or even know what Adhesive Arachnoiditis is. Now he is not only in pain, but is going through the horrible opiate medication withdrawal sickness. When will the sickness be over? I know the pain will not go away, but how long does the leg and arm twitching, diarrhea, and extreme fatigue go away if ever?? I try to stay positive in front of my husband, but I feel so bad for him and don't want to make him feel worse by discussing how bad he is feeling, either with the pains caused from the AA, or the horrible side effects brought on by stopping the 7-8 oxycodone 20mg tablets a day he was taking for the last year, before that he was on 240 Percocet 10/325 a month, and they switched him because of all the acetaminephin he was getting into his body, but never ever bothered to order any lab work to test his liver blood counts to make sure it was okay. Just trying to find someone to talk to right now, I'm kind of depressed. By the way, I am hoping and praying there is a surgery, medicine or procedure that will be a cure for this horrible Arachnoiditis soon, I hate to read how much other people are suffering also, I know there are those that are suffering way more than my husband and it's hard to fathom.
    Adhesive Arachnoiditis/opiate medications/knowledgeable doctors or surgeons
  • David CanavanDDavid Canavan Posts: 1
    edited 07/13/2016 - 9:19 AM
    So so sorry to hear you have this monster ilness i to have had it since 1996 i have just come across your discussion and its the same as it always is doctors hide the truth lie and even threaten to not help becaues they will not come out against others that have cauesed this killer syndrom they are still doing the same procedures to day and destroying familys and killing people one way or the other i have lost everthing job wife bringing my kids up couldent do that either it wasn't to bad at first 1996 but by 2003 i lost my job couldent hold a spanner in my hand and since 2009 wife left with my daughter 2011 thought i was finished started to make funeral arrangements nov 2011 by april 2012 had all over pain legs hands would claw up headaches were crippling on about 56 tablets a day 140 mg of oxycodone and 24 tablets of gabapentin a day plus many more death was welcome it could have me please then symptoms were to many and to varied could do nothing as everything i tried seem to inflame it even having a shower and then it just does it s own thing and decides to just attack me as if i was its worst enemy and it can be the cruelest master of pain words are not up to the task of explanation so die or live well i live my medication is down to 23 tablets a day i am at peace with it at this moment the pain is like lava flowing through my bodyi cant do anything it makes it worse i thought my life was over but not so i believe i will be heald of this and will get my life back when at its worst i pray in tongues it dont always take the pain away but i always have an innermost peace i have tried most othere things and my faith in Christ is the only answer and i have been given the faith to be healed my body hurts like hell but my spirit is in heaven and soon my body will join my spirit bont be upset at what i have wrighten and dont be put of i and you know there is nothing in this world that can help you get better if there is i wish you all the love in the world i hope you find it (they say there are no atheist in the trenches well you and i both know there ant any in such overwhelming pain because you have no choice but to cry help love and pray for you brother and sisters in an awful despicable cover up by the medical community. 

    Edited to remove religious discussion
    5.08 You agree not to engage in religious or political discussions. Posts regarding these subjects will be reviewed by the moderator team to determine if it can remain.
    Comment edited by Liz, Spine-health Moderator

  • Kimmy72KKimmy72 Posts: 1,767
    edited 07/12/2016 - 7:14 PM
    I was diagnosed with arachnoiditis some years ago now, and it was not mentioned on any MRI report until I asked why the nerves were so clumped to the sides of the dura on some images....

    WHAT!?!?!  This is how some of MY nerves looked on my MRI.  Nothing was ever said about "adhesive arachnoiditis"!!  I recently had a procedure--which involved a steroid/hyaluronidase/lidocaine injection called epidural lysis of adhesions, as I developed "epidural fibrosis" after spinal fusion surgery in January.

    Should I have asked, or should I BE asking my surgeon about this?  The lysis very much improved my symptoms, and I don't like to be an alarmist. 

    To all of you who posted in this thread...I am sorry for your suffering.
    Kimmy72, Spine-health Moderator
    Firm believer in PMA!
  • LizLiz Posts: 7,832
    edited 07/13/2016 - 9:22 AM
    This is an old discussion and those who created and had contributed to the discussion before today are no longer members or have not been since posting.
    Liz, Spine-health Moderator

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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