Welcome to the Pain Management Forum of MedHelp. I am very sorry to hear that you have this debilitating disease. Do you know the cause? I'm sure you are aware that there are three main causes. Regardless of the reason that you have developed this condition there is no cure for arachnoiditis.
Treatment options are geared toward pain relief and are similar to treatments for other chronic pain conditions. Sufferers of arachnoiditis are encouraged to join support groups or find other therapeutic outlets for stress. Treatment methods are generally focused on pain relief and maintaining quality of life. More research is needed about this and other chronic pain conditions so that someday a cure may be found.
Are you being treated by a good PMP? If not I recommend that you consult with one. If your state allows PCP to treat pain than I encourage you to find a good CPC that is familiar with this condition.
I wish I had better suggestions for you. Unfortunately the members of this forum know about chronic pain and the disruptions it can bring to our daily lives. We are here to support you in anyway you can. I hope you will stay with us and share your challenges. Please keep in touch and let us know how you are doing.
Take Care, Tuck
I was diagnosed with adhesive arachnoiditis six years ago. I know EXACTLY what you are going through. It's a real barrel of monkeys, isn't it?
With regard to the consensus on reversing it, unfortunately, most cases of arachnoiditis are lifelong. SOMETIMES, in instances where it is an exceptionally mild case, the most the person has to deal with is some discomfort and a small sampling of the myriad symptoms that this condition carries with it. If the person can take it easy long enough for the inflammation to subside a bit, it sometimes FEELS as though the condition has resolved itself and as long as they take it easy, they can kind of keep it in a type of remission.
For anyone, however, who has the condition to any appreciable degree, and especially for those of us who have the adhesive variety like I have, there is no hope at all of reversing and, in fact, we can look forward to a progression of the condition as more and more of the nerves adhere to each other.
When were you diagnosed? To what degree are you affected? What are you using to treat it? Do you know what happened that you ended up with it?
As I said, I was diagnosed six years ago. I am in the 5% that will eventually end up in a wheelchair. Right now we're treating it with oxycodone and NSAIDS, and it's giving me a fairly normal quality of life for a 51 year old woman, I'm not TOO limited in what I can do other than heavy lifting, and if I try to do too much otherwise, my body lets me know when I've overdone it. OCCASIONALLY one of my legs will stop working and go totally limp to the point where I don't have any control oveor it and it just dangles from my body like a 20 pound paperweight, but fortunately this doesn't happen too often. I got it from having a myelogram before surgery to remove three discs from my neck. It developed from irritation to the nerves in my spine from the myelographic dye. I have learned to live with the pain, but it's the other symptoms that are more of a bother sometimes. The inability to regulate my own body temperature, the sensation in the soles of my feet that feel like I have shards of broken glass stuck in them. The neurogenic bladder and bowel, now THOSE are fun to live with. Those days when it seems like I have to pee every five minutes, and those times when I lose count of how many days it has been since my last bowel movement.
I see my neurologist every other month so he can monitor the progress of it. Thank goodness I found a wonderful doctor who knows just what to expect from it, and who lets me ask as many dumb questions as I have to. He makes the prospect of dealing with this thing for the rest of my life less daunting.
I was Diagnosed with A.A. in 1998 , POST OP. have a Lumber-Peritoneal shunt , had a shunt revision & the NeuroSurg. left the TAIL too long. The tail is the part of the shunt that goes through the Pia/Arach/Dura into the cavity to relieve CSF pressure.So the tail was Touching,pushing directlyon the nerves.Went into surgery @ 11am - woke up in post-op about 1pm SCREAMING , screamed for 40mins straight until surgeon decided to give me 50mgs of Peth. Relieved pain just long enough for me to tell them where how Ect. the pain was - then I started screaming again,another 50mgs of Peth. I was lying on the bed hypervent,unable to focus,pulling my hair out,muscles relaxed enough that I physically couldn't scream but I I couldn't comunicate either.Many Drs, much consultation another 75mgs Peth. see how he is when he wakes up (now about 3pm) Woke up about 8pm SCREAMING - Drs had left the hospital and left no instructions on what to do. About 2hrs later they finally got the primary on the phone 150mgs of Peth. out like a light. 6am I started screaming again and they gave me another 75mgs. The primary wandered in at 11am and decided to send me for an MRI while I was unconcious Of course I woke up 20mins into a 45min MRI nearly an hour later they get some pain relief, back in the machine . MRI report reads "large unidentifiable mass in contact with CNS-recomend X-ray " Back on the ward everyone was laughing except me ! The Intern organised an X-ray which immediately revealed the problem.The primary was called looked at the X-ray and said "Well I guess we better get him back into surgery and cut that off " This was at about 3pm the day after surgery,( in the preceeding 24hrs I'd been given about 500mgs of Pethidene.) I was finally wheeled in for my second operation at 4pm, 2 days after the 1st op and 900mgs of Pethidene.When I woke up in recovery I was Swollen,in huge amounts of pain,but I wasn't screaming,it took 2weeks for the swelling to go down,another MRI and X-ray to make sure everything was in the right place,the MRI report identified the Arachnoiditis.The primary,the Surgeon confirmed the diagnosis of Arachnoiditis then promptly retired.
These two operations were done in 1998 , between 1982 & 1998 I had 11 operations & countless Lumber Punctions-the ULTIMATE cause of the Arachnoiditis. I have not had a pain free day since 1998.
Currently at Pain Management Clinic @ Nepean Hospital:7yrs. Prior @ Westmead PMC 2yrs
Currently taking: MSContin 20mgs 3 a day , Lyrica(Pregabalon)150mg morn 300mgs night, Maxalon PRN, Imovane 7.5/15mgs night as req.
And when I can afford it / when I can FIND it! I smoke pot .
One of the side effects of MSContin is you forget what your doing & You waffle on !!!!!!!!!!
I have been diagnosed with Adhesive Arachnoiditis. I have all sorts of stuff happening to me all at the same time and it started with constant back pain. I have had 4 back surgeries and one stimulator ( which helps tremendously). But the pain this time wouldn't go away at all and all I could do was lay on a heat pad. They finally after testing decided it was AA. I too am like you, on pain management and can still live my life to an ok degree. I have started PT and it has helped my back pain a lot! My muscles were so weak from having had so many surgeries and not moving a lot. I am now fighting autoimmune diseases with connective tissue disease and I think all of this is related somehow. I cannot find a Neurologist in my area familiar enough with AA to treat me, my ortho surgeon diagnosed me and my pain Dr. went along with the diagnosis. Is a Neurologist a must since I do have my Rheumatologist dealing with it all?