Guest guest Posted February 10, 2010 Report Share Posted February 10, 2010 Has anyone ever been diagnosed with this? I was really hoping for a herniated disc since I have four bulging discs in my lumbar area, but my neuro says that I have Arachnoiditis. If anyone has this, what medications are you on to try to control it? Thanks, Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 Barb . . . . Arachnoiditis is a very serious problem involving the clumping of your nerves and the development of scar tissue over your nerves. My cousin has it and it can be very painful. It is usually caused by too many procedures invading the spine - or you are born with it. There is a terrific website and group page all about it. You will learn so much and get support from these people. Check it out. Go to www.cofwa.com (circle of friends with arachnoiditis). These people are great and very credible!! I read all the group mails everyday. Hope that helps. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 Thanks Kathy, I have already started reading and joined that group yesterday. I may have had it for awhile, but the neuro has just diagnosed with me it since my lasg surgery back in June. My first tethered cord surgery back n June 2006 the neurosurgeon told me that I had nerves that were stuck together, but they thought it was from my original spina bifida, but apparently it is this disease instead and my nerves are continuing to adhere to each other. I guess I will just have to keep trying to get the right combo of medication that works for me and learn to live with it. Thanks for your response Barb > > Barb . . . . > > Arachnoiditis is a very serious problem involving the clumping of your nerves and the development of scar tissue over your nerves. My cousin has it and it can be very painful. It is usually caused by too many procedures invading the spine - or you are born with it. There is a terrific website and group page all about it. You will learn so much and get support from these people. Check it out. Go to www.cofwa.com (circle of friends with arachnoiditis). These people are great and very credible!! I read all the group mails everyday. > > Hope that helps. > > Kathy > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 > > Barb, I was diagnosed with arachnoiditis 30 yrs ago after injuring my spine lifting a patient and having laminectomies of L4-L5 and L5-S1 where " too much bone was removed " leaving me with an unstable spine. I was subsequently fused anteriorly from L2-S1. I have been on pain meds for the arachnoiditis as well as gabapentin. Hope that helps. Best of luck, Kate > Arachnoiditis > > > > Has anyone ever been diagnosed with this? I was really hoping for a herniated disc since I have four bulging discs in my lumbar area, but my neuro says that I have Arachnoiditis. > > If anyone has this, what medications are you on to try to control it? > > Thanks, > Barb > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 You're so quiet Diane I forgot you were on here! haha Add Diane to that AA group of us. > > > > > > > I have met so many people with this disease. I have had 5 back surgeries. I > > am 60 and it all started when I was 20 so it's been 40 years of hell. I am > > pain free 99% of the time and I feel so guilty sometimes because I don't > > have the pain that some people have. I had 3 daughters all natural and when > > the last one was only 5 months old I had my first surgery. Mine came from a > > back injury although I have never been able to determine what happened to > > me.I really feel for everyone here I know it's not a party. > > Janice > > > > arachnoiditis > > > > Hi Janice. You took the words right out of my mouth. I was wondering the > > same thing just the other day and planned on posting the same question. > > Although I did have surgery on my cervical spine about 17 years ago the > > arachnoiditis is in the lumbar spine. I suspect it is a result of the two > > epidurals I had during childbirth 20 and 22 years ago, luckily I had my > > first child the good old fashioned way, natural, the way God intended. > > Unfortunately I read of a lot of women on these sites in the same boat but > > who knew? I met a gal on the Life with Arachnoiditis group on Facebook that > > is going to sue her doctor regarding the epidurals given during childbirth, > > I have no interest in going down that road. > > > > ---------------------------------------------------------- > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 9.0.869 / Virus Database: 271.1.1/3250 - Release Date: 11/10/10 > > 23:34:00 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Yes for me. From: Me Sent: Friday, November 12, 2010 10:21 AM spinal problems Subject: Re: arachnoiditis I know in this group AT LEAST Janice, Kate, me, Deb and Sharon ALL have arachnoiditis. I know Janice's form (and I believe Deb's too) is adhesive arachnoiditis and so is mine. Is that what everyone else has too? > > > >> > >> > >> I have met so many people with this disease. I have had 5 back surgeries. > >> I > >> am 60 and it all started when I was 20 so it's been 40 years of hell. I > >> am > >> pain free 99% of the time and I feel so guilty sometimes because I don't > >> have the pain that some people have. I had 3 daughters all natural and > >> when > >> the last one was only 5 months old I had my first surgery. Mine came from > >> a > >> back injury although I have never been able to determine what happened to > >> me.I really feel for everyone here I know it's not a party. > >> Janice > >> > >> arachnoiditis > >> > >> Hi Janice. You took the words right out of my mouth. I was wondering the > >> same thing just the other day and planned on posting the same question. > >> Although I did have surgery on my cervical spine about 17 years ago the > >> arachnoiditis is in the lumbar spine. I suspect it is a result of the two > >> epidurals I had during childbirth 20 and 22 years ago, luckily I had my > >> first child the good old fashioned way, natural, the way God intended. > >> Unfortunately I read of a lot of women on these sites in the same boat > >> but > >> who knew? I met a gal on the Life with Arachnoiditis group on Facebook > >> that > >> is going to sue her doctor regarding the epidurals given during > >> childbirth, > >> I have no interest in going down that road. > >> > >> ---------------------------------------------------------- > >> > >> No virus found in this incoming message. > >> Checked by AVG - www.avg.com > >> Version: 9.0.869 / Virus Database: 271.1.1/3250 - Release Date: 11/10/10 > >> 23:34:00 > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Hi Kate I take 30mg.s of methadone in the morning and 20 mgs. at night before bed. If I should do something that makes me hurt during the day I take 40mg.s of oxycodone but I very seldom use it. I probably tried at least 10 pain drugs before I got the methadone and it was like a miracle to me with no side effects either. I get a little sleepy once in a while but it's nothing I can't deal with. I am not saying that methadone is everyones answer but you have to find a doctor who is willing to experiment with you until you find the right drug at the right dose.I only know it works for me. Janice arachnoiditis Hi Janice. You took the words right out of my mouth. I was wondering the same thing just the other day and planned on posting the same question. Although I did have surgery on my cervical spine about 17 years ago the arachnoiditis is in the lumbar spine. I suspect it is a result of the two epidurals I had during childbirth 20 and 22 years ago, luckily I had my first child the good old fashioned way, natural, the way God intended. Unfortunately I read of a lot of women on these sites in the same boat but who knew? I met a gal on the Life with Arachnoiditis group on Facebook that is going to sue her doctor regarding the epidurals given during childbirth, I have no interest in going down that road. ---------------------------------------------------------- No virus found in this incoming message. Checked by AVG - www.avg.com Version: 9.0.869 / Virus Database: 271.1.1/3250 - Release Date: 11/10/10 23:34:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Just about everyone has adhesive Arachnoiditis in some form all that means is the nerves and scar tissue has gotten almost sticky and they stick to each other causing a ball of scar tissue cutting off the nerves they are wrappen in. I dont' know if that makes any sense or not but that's my best explanitation. Janice arachnoiditis > >> > >> Hi Janice. You took the words right out of my mouth. I was wondering the > >> same thing just the other day and planned on posting the same question. > >> Although I did have surgery on my cervical spine about 17 years ago the > >> arachnoiditis is in the lumbar spine. I suspect it is a result of the two > >> epidurals I had during childbirth 20 and 22 years ago, luckily I had my > >> first child the good old fashioned way, natural, the way God intended. > >> Unfortunately I read of a lot of women on these sites in the same boat > >> but > >> who knew? I met a gal on the Life with Arachnoiditis group on Facebook > >> that > >> is going to sue her doctor regarding the epidurals given during > >> childbirth, > >> I have no interest in going down that road. > >> > >> ---------------------------------------------------------- > >> > >> No virus found in this incoming message. > >> Checked by AVG - www.avg.com > >> Version: 9.0.869 / Virus Database: 271.1.1/3250 - Release Date: 11/10/10 > >> 23:34:00 > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 I saw a neurosurgeon yesterday for a 2nd opinion, I do have ddd and have had one back surgery and was truely hoping that he would be able to to something. Turns out that is what I have and its really taken the wind out of my sails as I thought finially when seeing him that something could be done for my pain. Now I also feel why me, it seems life is so unfair. I am 43 and from what he was saying it is progressive. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010       I know what your saying, it isn't fair. Some people get it some don't. Some at an early age and some later. Its going to get worse with age, and distance. It is a very wide spread disease that knows no boundards. It is a life style change that comes early to some later to others. It is life and unpredictibile of what happens next. Mine came at 52 and changed my whole life. 5 surgeries later I am out of pain. I don't have much back left. Its in the over all plan of life that we have no control over. No bending, lifting, or twisting (blt) and things will work out. I am better then some and worse than others. Keep your appointments and the faith.  Ken From: <caesareacattery@...> Subject: Re: arachnoiditis spinal problems Date: Saturday, November 13, 2010, 8:30 AM  I saw a neurosurgeon yesterday for a 2nd opinion, I do have ddd and have had one back surgery and was truely hoping that he would be able to to something. Turns out that is what I have and its really taken the wind out of my sails as I thought finially when seeing him that something could be done for my pain. Now I also feel why me, it seems life is so unfair. I am 43 and from what he was saying it is progressive. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 DD is indeed progressive I have had it for 40 years but like everything else in life that gets thrown at us we must go on. If you don't have a pain doctor please find one who is willing to work with you to find the right plan that will work for you to help the pain. Janice Re: arachnoiditis I saw a neurosurgeon yesterday for a 2nd opinion, I do have ddd and have had one back surgery and was truely hoping that he would be able to to something. Turns out that is what I have and its really taken the wind out of my sails as I thought finially when seeing him that something could be done for my pain. Now I also feel why me, it seems life is so unfair. I am 43 and from what he was saying it is progressive. ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG - www.avg.com Version: 9.0.869 / Virus Database: 271.1.1/3253 - Release Date: 11/12/10 02:40:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2010 Report Share Posted November 14, 2010 For the other people with this I have a couple of questions. Reading up on it it says that it is normally worse when you get up and then it is supposed to improve with exercise. Mine hurts when I get up and then goes downhill from there during the day, with the pain getting worse. I am only 43 so this is really hard to accept that this is it and that it won't get better. It also does not mention much the nerve issues, I have the pins and needles in my legs and also a lot of nerve pain and just wanted to see what symptoms other people had. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2010 Report Share Posted November 14, 2010 I'm sorry that you feel that way but please try to remember that there are tons of people that are in worse shape than people like us are. We all have our moments of why me. I was only 42 when I found out that I had arachnoiditis and had my first tethered spinal cord surgery. Life doesn't end just because you find out you have something that is chronic and progressive. DDD can actually be a very slow progression. Try to focus on what helps like exercise and diet if you have any weight issues and that will help a lot. Plus the exercise will help with the depression that comes with pain. Good luck and I hope you cheer up soon. Barb > > > I saw a neurosurgeon yesterday for a 2nd opinion, I do have ddd and have had one back surgery and was truely hoping that he would be able to to something. Turns out that is what I have and its really taken the wind out of my sails as I thought finially when seeing him that something could be done for my pain. Now I also feel why me, it seems life is so unfair. I am 43 and from what he was saying it is progressive. > > > Quote Link to comment Share on other sites More sharing options...
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