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jysingletonjjysingleton Posts: 16
edited 06/11/2012 - 8:41 AM in Chronic Pain
Hi..I am fairly new to the forum I have recently been diagnosed with Arachnoiditis..I have been reading bits about it here and there and wonder if there is anyone who has information or advise. And when I was at Emergency my Spine doc (I have a multi level fusion)told me it was showing up on my MRI and referred me to a Neurologist who came down to speak to me. He talked to me about Meds and put me on bed rest for 3-4 days min because it is inflamed right now. The spine doc made it seem like it was not too much of a big deal and it would come and go and the Neurologist acknowledged my severe leg pain and told me this was a chronic condition with no cure. What is the difference between Adhesive Arachnoiditis and Arachnoiditis. The neuro guy told me that my nerves were fused together..?

Thank you for any information Jen


  • Hi Jen,

    Sorry that you have been diagnost with this disorder. I also have it, and belong to several support internet groups, which have taught me alot about this disorder. This disorder is rare, so finding information can be hard. The cause of this disorder can be linked to lots of different proceedures, and ailments. Some, but not all, and just because a person has had one of these things, doesn't mean that they will develope arachnoiditis. Here are just a few of the most common failed back surgery, myleograms, menengitis, esi, scar tissue, and the more surgery don't to an area increases the odds. This is only a partical list.

    First as far as I know in my research on arachnoiditis, arachnoiditis and adhesive arachnoiditis are the same thing. Just a fancier longer more discriptive name.

    As for your next question. the arachnoid membrane fusing(gluing) to your nerve(L2-S2) and spinal cord is very true. There are 3 stages to this fusing of the nerves.

    If you would like some info on support groups, some more info about this disorder, or info on some leading dr for this disorder. Please feel free to contact me through a pm. I'd be more than willing to help you.

    Bobbi Jo
  • There was a woman on the board a couple months ago from Canada that is doing work to raise the public's and the medical profession's awareness to arachnoiditis. I found a thread from about 6 weeks ago that contains some of her posts. Read through it and you might want to write her a private message. I haven't seen her on the board lately.

    http://www.spine-health.com/forum/conditions-not-covered-other-topics/arachnoiditis and


    Also here is a basic article on the topic:


    You can also search online and you will find that there are at least two support groups with websites that have more specific information.

    This is a serious condition although much is unknown about it. There are varying degrees of arachnoiditis with the adhesive arachnoiditis being the most severe.

    The way it is usually described is nerve clumping. The spinal nerves stick together which causes them to malfunction. This causes a variety of symptoms associated with typical spinal nerve pain.

    One of the problems with treatment is that the condition can spread if it is invaded by a surgical procedure, needles, etc. so most doctors try to manage the patients' symptoms.

    I'm very sorry you were diagnosed with this. Read as much as you can about it as you will not necessarily be able to depend on your own doctor for information. Many do not know much about it...or choose to ignore it...I'm not sure which. I've always had a hard time getting any information out of the surgeons and pain management doctors I have known.

    There may be someone on the board who has arachnoiditis. If so, I hope they see your post.

    Good luck.

  • This is a very important topic that all of us need to be aware of. It is very hard to get a spinal surgeon to discuss it with a patient. I always wonder why.

    This is the best information I have found on the topic, written by a doctor who has been on the forefront of research pertaining to arachnoiditis: (I am linking to the main page where you can select which topics you care to read.)

  • Thank you all so much for the information I will read it and digest it all...I am scared that it will progress and I will get worse ..Does doing too much make it worse? progressing to another level?..I think I can handle what level I am at now..as it seems to go away with rest. I have been on bedrest now for several days and my legs have calmed, they were on fire a few days ago. And because I have been living with a bad back for 12 years I am used to doing what I can when I can. My spine doc said to me in emerg the other day that he has known for 2 years that I had it but because i was not presenting with symptoms he never told me..but I have been under his care again for the last 2 years and i have had extreme lower back ache and leg pain? I felt like i was crazy?? even though I have had a trauma and a multi level fusion 12 years ago he would shrug his shoulders and give me no answers until i went to emerg the other day and I think he had to tell me. I just think thats wrong..I just want to know more and move on...thank you so much for the information..Jen
  • Thank you all so much for the information I will read it and digest it all...I am scared that it will progress and I will get worse ..Does doing too much make it worse? progressing to another level?..I think I can handle what level I am at now..as it seems to go away with rest. I have been on bedrest now for several days and my legs have calmed, they were on fire a few days ago. And because I have been living with a bad back for 12 years I am used to doing what I can when I can. My spine doc said to me in emerg the other day that he has known for 2 years that I had it but because i was not presenting with symptoms he never told me..but I have been under his care again for the last 2 years and i have had extreme lower back ache and leg pain? I felt like i was crazy?? even though I have had a trauma and a multi level fusion 12 years ago he would shrug his shoulders and give me no answers until i went to emerg the other day and I think he had to tell me. I just think thats wrong..I just want to know more and move on...thank you so much for the information..Jen
  • I thank you all so much for the information and i have read it all and digested it as best i can. I am nervous of course but as I read I realize that is not the best approach just the human one. I am happy to have all of you! it is so nice to have support!!..as the docs have been so unclear and for two years i have felt like i was crazy! My doc would look at me and shrug his shoulders and he KNEW!! I am mad but i will get over it he saved my life at one time and i do look up to him for that. OK away from that...I think from here i need to find out what level of arachnoiditis I am at...i was referred to a Neurologist and he said i could call him or see him anytime i had questions (He was so kind, I just didnt know what questions to ask him at the time he told me when i was hospitalized) I wonder if a spinal chord stimulator would work? I am on 2000mg of Gabapentin, 600mg of Advil, and I take a Percocet when needed (I also have this annoying unstable vertabrae that needs to be fused above my previous fusion)..I weaned myself of the Oxy as it was putting me in a haze and i find I only need a couple percocet a day depending on activity level. These drugs are ok if i am not doing too much...but i am extreemly active..and i wonder if i will ever return to my normal activities. I am happy to hear walking helps because that is my fav thing to do..I was so worried that would make it worse...My other question is I have had 4 Facet Joint injections over the last year and a bit...Is that the same as an Epidural Injection...I Know my Arachnoiditis is from the original fusion surgery i had years ago...but i have been injected does that make it worse or flare it up?

    Thank you! so much..You have brightened my spirits with your help and kindness..Jen
  • I'm the one that mentioned you, and I am so glad to see you back on the board. You have so much knowledge on the topic that is beneficial to all spine patients.

    I have exchanged emails with Dr. B...and had considered seeing him for a surgical opinion. He was very nice and responded to my email almost immediately, even though I thought I was writing to an office staff person and it was the weekend.

    I was having a lot of diagnostic injections during the past year. I mentioned that I was worried about arachnoiditis and NONE of the nurses there had ever heard of it...and the doctor just kind of looked at me, shrugged and said it was nothing to worry about. How frustrating.


    Post edited by Authority Member haglandc to remove name of medical professional
  • I suffer from this problem. My current condition isn't to bad yet, but it is progressive and frustrating to say the least. From what I've read, narcotics can provide some relief (they do for me) and there is also anyone of the tried and true nerve drugs (I'm intolerant to them) that are also helpful. I recently got a stimulator implanted to assist in managing this condition.

    My best advice is to not get hung up on the diagnosis and concentrate more on identifying your triggers so you can better manage your day to day life. To answer your question on does doing to much make it worse? I walk several miles and stretch daily. My Doctor and I believe that I have managed to slow the progression of my condition to a crawl because of my activity. Doing nothing usually makes me more aware of my condition.

    Feel free to PM me if you have questions or solutions that you have come across.

  • Hi Good Morning here in rainy BC Canada! I would like more info Louise please on the UK doc that has Arachnoiditis if you could send me a PM that would be greatly appreciated. And Gwennie, Thank you for all the info you have sent, I tried sending you a PM I hope i did it correctly.

    I am confused as to why my amazing surgeon who I have looked up to for years! Injected me with Facet Joint Injections when he knew I had Arachnoiditis..and to add insult to injury he never told me I had it until he had to in Emerg the other day. I know I should not dwell on the past I need to focus on the future..but I really am left very sad because I cannot help but think the injections flared up the disease the timing is just too coincedental. I am also saddened because he no longer seems to want to have anything to do with me and he was quite cold and jumpy with me. Until he sent down the Neurologist who took the time to go over meds explain the disease and the flare ups etc he gave me a card and i can go see him anytime.

    I know I have to live with this forever as there seems to be no cure at this time. I would love to take a Percocet or something stronger at this point because my leg pain is coming back but i do not want to become immune if it gets worse in the future...so I stay on just the Gabapentin and the Advil with an occasional Percocet when really needed...I am going to talk to my GP when I can get in to see him next week..he will help me out with what to do he is great I am going to ask him if its best to be on more of a regular schedule...I have been going to him since i was 10..

    Thank you and take care..Jen
  • I certainly understand your feeling. It is almost like betrayal, that your surgeon did not tell you sooner. However, I must say I am not surprised. He probably figured there was no point in worrying you and he was hoping that it wouldn't act up and there was no need for you to know. It is easy to explain away his actions, but it hurts, nonetheless.

    Perhaps he was more ignorant of the condition than he let on. Plus who knows what was being taught about it in years past. I think a lot of surgeons truthfully do not know much about it. At least I would like to believe that rather than they all are just plain lying to our faces!

    Are you ready for the Olympics?? I can't wait. I postponed my surgery so I wouldn't be in a drug-induced stupor and miss it all! So I'm going in the first date after the final ceremonies!!

  • I'd be surprised if the Facet Joint Injections have exasperated your condition unless the injection was so misplaced. It's probably more of a coincidence and your Arachnoiditis is just progressing. You may want to consider switching from Percoset to Oxycodone. The Tylenol component of Percoset will have adverse effects on your Liver over the long haul. I switched to Oxy about a year and a half ago. I'll take Tylenol occasionally, but I have found that it really does nothing for the nerve pain. It is very beneficial if you've had a bout with muscle cramps.

    Have you ever tried Lyrcia (Pregabalin)? If it works, studies show that it's much more effective than Neurontin (Gabapentin).

  • Hi Gwennie, thank you for understanding..I will get over it..i guess I will never understand why he didnt tell me, I may ask him one day but for now I need to focus on my future..I am feeling much better today the rest really helps with this disease and I did a lot of research on it last night so I feel more prepared to face it. I do beleive my surgeon knows nothing about the disease he would just never want to see me in pain i have to believe that..The Olympics are great!..we have been seeing lots of action here and i love watching it on TV! But I have never been too crazy about watching sports..like my husband haha..he loves it..

    Hi Dave, I did lots of research and feel so much better about the topic and your right i would be suprised if the Facet Joint injections flared it up. My Surgeon has known I have had Arachnoiditis for 2years and was injecting me for OsteoArthitis Diagnostic...I have read that a person with this disease should not be injected at all but really we will just never know probably. I did switch to the Oxy's and I have to say I feel much better I take 10mg morn and 10 at night...its not enough to manage the mid back pain I am having but I dont want to take more at this point..I have an appointment tomorrow with my GP to go over Pain Managment and what to do with my misaligned Vertabrae...I dont know whether to push to fix it at this point or to leave it! it causes mid back knifing type pain by about 2pm on..at about a 7? (this is with the oxy) I can treat it with Drug therapy but still want to consider fusing it....I tried Lyrica and it was so great with my nerve pain and then my face swelled up! my eyes and my throat..so I cannot take it...I wonder about Cymbalta..that was suggested?

    Questions Questions...I know that we are not medical experts but I really appreciate the advise...I do research and take it to my doc...Thank you!!!

  • If you want other nerve drugs to try, there is Cymbalta as you mentioned, Topomax, and Savella. That's a tough one when considering additional surgery when you have this condition. I'd have to be fairly disabled to succumb to another fusion surgery on another level, but that's just me. Of course, take that comment with a grain of salt cause I'm not faced with that decision.

  • I think your right..and i feel like i have so much pain but really I can releive it with relaxing and changing positions...and there is no hurry I have been journaling every night before bed to keep track of what bothers me and when I feel best..It is really suprising what I forget. I really dont want to be put under another surgery so I will wait! It is my decision :)

    Thank you for the info on the nerve drugs I will take to my doc.. Jen
  • Hello Everyone!

    My names Regina. And i'm new here and was diagnosed with Arachnoiditis on 02/10/10. I have Degenerative Disc Disease, Osteo-Arthritis, and Spinal Stenosis.

    I've had 2 spinal fusions with instrumentation. One was in 2002 and the other in 2006. I'm fused from L3-S1. L5-S1 was my last surgery and appears to be the cause of all my problems. Since 2006 i have gotten progressively worse. Pain wise. My pain stays at a 7 on a daily basis on a pain scale of 0-10 (10 being the worst). It is constent with very little relief.
    I am pretty much bed bound except when my family makes me leave the house to lift my spirits. Lying down is the only thing that seems to help with the pain.

    I started seeing a wonderful pain management doctor about a year ago. I've never met a doctor who truly cares about me like he does. We have tried steroid injections and even a spinal cord stimulator trial. The steroid injection worked at first but it don't last. A week ago i had the trial version of the Pain Pump. When i woke up in recovery my pain was totally gone. I was almost in tears. I haven't felt like that in years. My last MRI was in Feb of 2006. In order to implant the pain pump he had to send me to a Neurosurgeon. The neurosurgeon along with my pain management doctor will do the surgery. Anyway, i had to have a updated MRI before my appointment today. When we received the report it said i have Arachnoiditis. I had never heard of that before today. From what i've read in your posts the steroid injections probably didn't help my diagnosis out any. But being unaware of my condition it couldn't be helped. My neurosurgeon told me that it is not curable but he can treat my symptoms and that the pain pump will help me out with the pain issues. I haven't read in any of your posts about anyone having this procedure done. But my neurosurgeon said i'm a prime candidate for this procedure.

    I feel alot like Jen. I'm kinda scared about the progession of this disease. But i'm not going down without a fight.

    I've tried Lyrica and Neurontin but they doesn't help. I just suffer with the pain b/c i'm scared to be addicted to the pain medication. I do take Darvocet (PRN) for pain when i can't stand it anymore. But it barely touches my pain.


  • Regina,

    Welcome to the board. There are a couple of members on here that have a pump. Not sure if they have our diagnosis but they do report that it helps. Am I wrong in that you take no pain medications with the exception of Darvocet for breakthru. I can't imagine what it would be like to not take anything. You can't be worried about being addicted to pain medications. It's true that you will develop a level of dependency, but that's not addiction. A pump is a huge commitment. It may not be a bad idea, if you haven't already tried it yet, to sit down and talk to your Doctor to see if you can identify an Oral med solution for the time being. It sounds like the pump is in your future. If it were me, I would try and put it off for as long as possible.

    I also am unable to take the nerve drugs, limiting me to Oxycodone and the stimulator as my management solution. It's not a perfect world, but I hold down a full time job that I'm currently not willing to give up just yet.

    Good luck with whatever you decide to do.

  • Good Morning Dave,

    Thanks so much for responding to my post. You are not wrong. I do not take any pain medications besides Darvocet for my pain. Which is constant. I just deal with it the best way i can. This past year it's been lying in bed about 90 % of the time. I honestly didn't think there was anything they could do for me.

    I'm at my breaking point though. I've been having pain for the past 2 yrs. I am a disabled nurse and i've seen first hand the effects narcotic addictions have on patients. I have noticed myself needing more and more pain meds at one point. That's why i decided to not take them on a daily basis. I'm still fairly young at 38. My husband and I are raising 3 children still. I've attempted the stimulator trial and they couldn't even get it in with my back problems. My next option is the Pain Pump. The trial was almost 2 weeks ago. Great results. Not that i want to have another surgery but i need some relief from this pain. A body can only take so much pain. Recently my blood pressure has been on the rise b/c of the pain. If i don't get it under control soon i will have more and more issues to deal with. I'm just trying to figure out the best option for me and my family. They used Dilaudid in the trial and will use it in the actual pain pump. If it takes 50% of my pain away in the end it will be so worth it. I just want some type of life back. I won't get my old life back but i will be able to function again. I haven't given up hope that i may be able to work in some type of capacity one day. Baby steps though. This is a heartbreaking illness. It has totally changed my life and my way of thinking. But i have more then myself to think about.

    I do wish you the best of luck. Stay strong. That's what i tell myself every day. Everything happens for a reason. Some days are harder then others but with each others help we can get through this.

  • Hi Regina, I am so sorry to read you are having such troubles I do know its hard when you are in so much pain. I had the same attitude that you now have toward narcotics back a couple years ago. It would be especially hard for you seeing people hurting so badly. I still struggle with the fact this disease is progressive and not curable at this time but like you I too am not going down without a fight (I love that attitude!) I have been doing alot of reading and learning what I can... and I am so happy to have this forum as it helps to get feedback and read what others are going thru and how they handle their pain.

    I started on painkillers about two years ago (I lived 10 years with my fusion relativly pain free just the ache that came after a long day or from sitting for extended periods) I started on Tramadol in the form of Tramacet I took that for about a year and a half and i was active and feeling good...I love nutrition and cooking and I try to go to the gym at least 4 days a week. I do not like high impact (anything of course) i keep everything low low impact and I only do what I am comfy at. I read all about weights and training and I would put myself in a stable position and do my training. I am telling you all this because it is important to me to stay active. More important than the worry of addiction....I know everybody is different and I really struggled with some of the decisions I have made because I was always proud to be drug free. I then had a second Waterskiing accident that changed everything as I have a relativly unstable (its rocking on my facet joints but not a concern with regard to my Cord) misaligned vertabrae above my fusion. I had to increase the amount of Tramadol (moving on to Ralevia - Tramadol Hydro Chloride I think) I took in order to stay active. Then I started getting this leg pain and it all went down hill from there..I find it hard to do much...No Restaurants, No Movies, No alot of things...including the gym. My doctor then tried some other things and I ended up on Oxycontin. WOW for me this is unbeleivable??...so I kept pushing my docs for answers and feeling terrible and bad...and begging them to fix the problem so that i could go off the drugs. So they booked me for another fusion...I was happy! right?! this was what I wanted...I was on a waiting list for surgery when i woke up in terrible pain and my leg pain was insane. There was no comfort and no drugs helped. I was confused and scared..so my mom took me to emergency...That is where i found out I had Arachnoiditis...So here I am now. I take my Oxycontin and Gabapentin I enjoy my good days and I rest on my bad days (They suck but for me they do get better after strict rest)...I do not have to work and I know it would be different if I did...But for now I am in a routine and I can cope...I am learning to really appreciate the little things in life. Like CSI reruns (kidding..) :)

  • I'm now on Dilaudid 2 mg every 8 hrs until my surgery. I caved. Just can't take it anymore. I won't make it another month in this much pain. Jen have you spoken to your doctor about the Pain Pump? I know i was skeptical at first b/c i didn't want to have any more surgery or people messing with my already bad back. But when i woke up from the trial, i was pain free for the first time in years. Now the actual pain pump will probably not take away all the pain but it will give me back some sort of life. The trial was a single injection. But it last 48 hrs when it was only supposed to last 6 hrs. The benefits outway the risks for me. I begged them not to send me home. Keep me there until my surgery date. lol...I will definitley let you know how it turns out. It's March 11 so one month from today. I too have no life. I stay home day in and day out. Rarely go anywhere unless i have a so called "good day". But i don't have many of those. The cold weather fronts that come through just kill me. They lay me up for weeks. Do you have that issue as well?

    I am unable to exercise at all. But i am good at watching television. We could be excellent CSI's..lol.. My husband and teenagers help me out alot. But for me that was the hardest thing. I was always very independent and strong. Took care of the house, home, and family. Letting someone else do that made me helpless. I'm dealing with this on a daily basis. Leaving it in the hands of the good lord above and my doctors. It's a struggle but i'm determined not to let it get the best of me.

  • Thanks Gwennie for directing me to that Dr. website explaining the differences between Archnoiditis and Adhesive Arachnoiditis. All I can say is, "WOW! What a differnce! And what a clever way to explain the differences." I think it easy to confuse the 2, especialy when your new to this disorder.

    I know how hard it is to decide on what route one should take for this disorder. I also have a twisted L3 vertebrae above my fusion, and my physiatrist is talking scs. I'm realy scared of the thought of more surgery. I develope scar tissue very easily, and quickly. After reading how so many people, and my family members have turned out not sure if this is for me. I also been given a choice of a caudal epidural. I'm happy that after further tests, this is no longer an option. Sorry my dr never mentioned anything about a pain pump.

    Up until Nov 09, I spent most of my time in bed. I had been on some form of oxycodone for over 3 yrs, and it was no longer was really working. My pm dr slowly switched my meds around, so that he was only introduction 1 new med a month. For side effect reasons, which makes good sence. So when it came to putting me on methadone, which is good for nerve pain, he was going to leave me a perocets for break thru pain. I wanted no part of it. I felt 1 strong med was enough for me, so I went to darvecets instead. My dr was worried about withdrawls, but I wasn't. See I could take up to 8 percs a day, but I never got 240 pills. I got 180 only, and I would run out sometimes for a week or less with no withdrawl problems.

    Now that I'm on methadone and darvecet, I function better. I'm doing more now than I have in the last 2 years. As my mom says, "The lights are on, and now somebodies home." For me this is the route I'm going, pain meds. I'm already have adhesive arachnoiditis(possibly stage 2 or very close), so I don't want to speed it up or make it worse.

    I'm not saying my way is the best way, and there are afew options for people with this disorder. And I agree there is a bad stigma associated with taking strong pain meds. Some of my family members, and close friends think that taking pain meds is just terrible. So this time when I changed pain meds, I just kept it to my mom and dad. It's better that way, and I function normaly with low pain levels.

    Maybe as this disorder progresses, and the pain gets to where the meds no longer work. Then I may consider a scs, but for me it would have to be a last resort.

    Bobbi Jo
  • That's great that your able to strike a balance utilizing oral meds. Hopefully you can stave off other forms of treatments until the oral meds breakdown for you, hopefully years from now.

    You mentioned that you are possibly a stage 2? I have not found a document that defines stages for this diagnosis. Do you have a link?

  • Hey Dave,

    I do have a website, and I sent it to you in a pm. Any problem with it just let me know. Thank, I so agree. I hope I do have year to hold off really having to make a decision other than otal medication.

    Bobbi Jo
  • Hi :)

    Regina, How are you doing with the Diluadid? Is it helping? I hope you are doing better and up and walking...From what I have read walking is really good for this disease.. What is a Pain Pump? I have never heard of it...

    When I was in emerg last time my Ortho Surgeon said he wanted to re evaluate my surgery and see me in two weeks. I was on a waiting list for another fusion. I dont think he wants to do it now I have Arachnoiditis. Is it ok to have a surgery with this disease? I think any invasive procedure could inflame it or make it worse...so I am evaluating and journaling my mid back pain to see if I really want the surgery.

    With all the reading I have been doing I still am not sure I understand the difference between Adhesive Arachnoiditis and Arachnoitis? I guess it doesnt really matter I am just nervous I am going to progress..

    I think I am doing fairly well with my pain meds..I am so thankful that we have them available to us and I have learned to live with the "stigma" I am pretty open about them as I think, when used appropriatly, these drugs are life saving for chronic pain patients. Its been hard I have had extended family members judge me and it caused some problems. I know my decisions are far from perfect but all i want is an opportunity to live the fullest life I can.

    And yes I would make a wonderful CSI! and I love to scrapbook! I have taken the downtime to organize my albums..I trap unsuspecting visitors into looking at them.. :) .. Jen
  • It's helping some. Wish it would help more but i just started taking it and the weather is not helping here. It's freezing. I sent you a PM also. Talk to you soon! Hugs

  • Sorry Bobbi Jo but, I have arachnoiditis as well, and arach and adhesive arachnoiditis are not the same thing. Arachnoiditis can include simple inflamatory (beginners) arachnoiditis. Oh how I wish I had that. I have adhesive arachnoiditis which is the advanced form of arachnoiditis where the fibrils of collagen cause the walls of the spinal cord to enmesh the spinal cord nerves with the scar tissue, which cause the spinal nerves to degenerate and cuts off the nutrients to the spinal cord. The scar tissue will eventually do its best to kill the cord and nerve roots.

    This is the beginning of a long and painful process that finally results in arachnoiditis ossificans, the final stage. Arachnoiditis is a progressive condition, some people advance in it, while others may go through the stages very slowly or just stay at one level. It is vastly more painful as the condition advances. I had inflamatory arach in the late 80s/early 90s, and have had adhesive arach since the mid 1990s.

    When it got to the suicide pain level, I was finally granted a morphine pump (intrathecal pain pump) which at least gave me enough pain relief to be able to cope, more or less, with the flares that come and go. I did suffer relentlessly for 10 years before I qualified for the pump. That was a very rough ten years. This condition affects different people differently, and can be accelerated by bad weather, cold weather and./or low pressure fronts.

    I suggest you hit google and investigate arachnoiditis. There is a ton of pertinent information out there, and as we have seen here, no lack of inaccurate information as well. Dr. Charles V Burton in Minneapolis MN is considered one of the premier experts on this topic and has several videos you can purchase that demonstrate what this condition is and what it does to the body. I suggest you google him as well if you want detailed information.

    Good luck coping with this condition. It is a handful.

  • Hi. I'm new here. Could I get that website you mentioned in this post too? Thanks for your help.
  • Hello everyone. I am sorry to hear that you are all in such pain, but am also grateful to find this site. I had no spine pain until I gave birth to my daughter 2 years ago. Something happened to me that day and I haven't been the same since. I won't go into all the details, but I would like to list a few of the things that I am experiencing of late and ask if this sounds like arachnoiditis to you all. I have been searching for answers for two years. My spine burns and throbs. I have numbness and pain in my right leg from the thigh to my toes. The tops of my feet burn. I run intermittent low grade fevers for no apparent reason. I have developed an area on my back that is very sensitive to touch and at times itches with an itch that cannot be satisfied. My husband calls it "the spot." I get tingling/buzzing sensations at various places. My neck seems to be achy alot. My lower legs swell off and on. Sometimes I have trouble swallowing (maybe this is something else). Flulike with vertigo at times. Also, a couple months ago I experienced a very brief episode of what I now know is called pleurisy (maybe not associated with this, I don't know). Also, now my shoulder joints have started to feel like this same burning pain. Sometimes the burning goes like this: it will burn for a few days/week, then burn and itch, then hurt/burn, then lighten up. Does this sound like the condition that you all have? Thanks for your time. Any comments/responses will be greatly appreciated.
  • I can't believe I was so naive, ignorant, and careless with my body as to let someone stick a needle in my spine.
  • I realize this post is getting pretty long but I had to add on to it. I have Stage 3 Adhesive Arachnoiditis. I have had 6 lower back surgeries, 2 Chiari decompressions and a Posterior/anterior fusion at C5-6. I have dealt with the burning pain since 1997. We never knew what it was. It wasn't till they opened my skull for the 2nd Chiari surgery and put a patch on my Dura that the AA came alive and hit Stage 3 ('09). When they opened my skull up for the first surgery, they found an abundance of Arachnoid Adhesions. The 2nd Chiari surgery that I had, 6 months later, they found the same thing. Each surgery made the AA worse. So NO - I don't recommend surgery unless it is absolute emergency.

    Where I am at now with this is that I cannot move a lot without paying for it. The only exercise that I can do is isometric. I lost my balance and now have to use a walker, I am only 48. YES - AA is progressive. I am proof of it. I am (like most of us) on major pain meds 24/7. To those thinking of having a pain pump put in who are early in this disease - please do more research. Most of the specialists in this do not recommend them for us, due to AA being scar tissue. A huge percentage of them fail. I personally know several women who have had them fail - now the places they were, are pain generating spots. :( But if you decide to have them anyway - wait a few years till regular meds are no longer helping.

    And it isn't an Illness that we can say "If you decide to get up and do things you can." that simply isn't true. In the early stages - yes. But there are things we all can do at ALL stages - even as we aren't feeling good to help others - To not make others feel worse about themselves by lashing out at them is a really good start! :-)

    Wishing all a 1/2 pain day!
    Terry Lynne
  • mjm70x7mmjm70x7 Posts: 1
    edited 01/22/2015 - 4:16 AM
    Hi Jen. Sorry to hear about your pain. I too have arachnoiditis but i have not had any problems for 3 year until now. 3 years ago i became very ill after receiving a 3 steroid injection for pain on my right lower back which we now know was a sacroiliac condition. Soon after the injection i started have problem with the use of my left leg. I couldnt walk right. They did a MRI showing the beginning of Arachnoiditis. I saw my spine surgeon who I had not seen in years. He had done 5 spine surgeries with amazing result in the past. He did not tell me my MRI showed arachnoiditis and he knew I had seen his pain management department. My physical therapist read my report and told me I had the beginning of Arachnoiditis. So i did research. I was already seening a holistic dr. so I took the PK PROTICAL to him. He did weekly infusions of phosphatidylcholine and glutathione. Within months i was walking without a cane and I had some bowel and bladder problems and that disappeared. And 95 persent of my pain was gone. My spine surgeon did much testing on me and it showed much nerve damage to my left leg and buttochs but after the pk protocol i was left with a small amount of foot numbness. Just recently I had a small pop in my spine and I started having left leg pain and numbness again. I was thrown off by this because of the popping noise thinking i did something to my back. MRI showed no real changes. I did not know that I could have a flare up and so I believe that is what is happening. Ive been doing physical therapy and have been doing that since 3 years ago. I also injured both shoulders from having to pull myself up and had surgery on one and been therapy on both of those. This has been a costly adventure for us. I am going back to my holistic dr. ASAP since I believe this is what is going on with me. I will let you know my results. I also wanted to tell you that if it hadn't been that I have such faith in God i dont think I could of made this horrible journey. I am blessed in many ways and I know that. I will be praying for you. Blessings to you!
    Mary Mitchell
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