I, also, was diagnosed TODAY with Arachnoiditis. My Neurologist stated that was nothing more that he could do for me and was sending my diagnosis along with his recommendations right away to my Pain Management Doctor, stating it would be there by the time I arrived there today. He stated that the only thing left for me was a pain pump (which he is going to recommend) or a Nerve Stimulator. I asked him what happened it these two modes didn't work, and he stated that Pain Management would be there for me. As he walked me out to the lobby, he apologized for not being able to help me and stated that he hated giving people this kind of diagnosis. He also stated that if I ever needed someone to talk to or was confused about any treatments, etc. to give him a call.
At the time, his comments went right over my head and I didn't quite get his drifts until I was driving back to work. I just thought he was being extremely nice. But when I got back to work and looked it up on the Internet, Iwas stunned. I had no idea. What scares me is that I have so much scar tissue from my 2 level fusion in Dec, 2005, that he could not get the contrast in my spinal cord during the Myelogram, even after he waited for quite a while (I don't understand this part, but it must have been important to mention it).
Anyways, I'm scared . . . . I'm a healthy, young 55 year old. I didn't see this coming. I have always been VERY optimistic and never felt I wasn't going to get better . . . it was just going to take time.
Can anybody give me any information on this and what I can expect now and in later years???? What I have read to date doesn't really say much except that it can paralize you.
Any information would be greatly appreciated!
I, too, suffer with Arachnoditis. I was given the news, about three years ago. I have had four back surgerys. The first simple disc ectomy, which herniated the 3rd day, which lead to the second surgery. Then, a third one was a fusion. However, screws broke, within about 3 months, for no known reason!! Can you imagine? Which lead to a very invasive 4th surgery. All of this since 2001.
I don't mean to be the bug in the soup. But I have studied, read and asked tons of question to many, with the same answer of nothing to be done, except to manage the pain. I am 41 and a single mom, of three. I will not have the pump or stimulator put in, at this time, because I just don't want to be cut on, again. I have heard good and bad from it. But, that can go for anything.
I do not have a day without pain and take pain medicine daily. And, yes, there are days, even a week, I can't or barely can get out of bed, but I don't stop living. I am totally disabled and do not work, any longer, but I do my very best to stay busy, at home. I have a garden, flowers and, on occasion, I take a four wheeler ride, with my little girl. I do what I want, when I am able. Only thing I have to remember is what I will have to deal with, for days to come. If I have a good day in the garden, then I can plan for 3-4 bad days or in bed. Same goes for anything else I do, but I want let it have complete control of my life. It has taken enough away from me.
So, on your good days, enjoy life to the fullest and learn to appreciate those moments. I never realized what I took for granted, like bending and lifting a pot, from the cabinet, to cook supper, for my family. Now, I love when I am able to. Learn to embrace your life.
There are days I am afraid I will not be able to care for myself or my children, but I only allow myself a short time of feeling sorry or worry!! Because, like this evening, my oldest daughter is in her High School Pageant and I am so thankful to be able to go! That is why I can't allow myself to long to worry, because then I would be waisting good time.
I wish I could have given everyone who suffers with this dreadful thing a wonderful cure, but I can't. All I can say is it really comes down to how we handle it in our minds. I hope I have given someone encouragement that our lives are not over and we still have living to do. Just don't give up hope, there is always a chance for a cure or miracle.
You sound SO upbeat! I have had a great attitude about all of this until I got my diagnosis. Now I worry about what tomorrow will bring. I'm still working, although when I went to Pain Management on Friday, she questioned why I was. The thing is, I can't afford not to. And I don't even know where to start about getting disability. From what I have read on the Internet, it's not an easy thing to get. I asked at Pain Management what steps I would take to get this started, and she didn't have a clue. Anyways, you sound SO much like me as I do appreciate my good days, and I try to keep a good attitude about the bad days. My problem now is that I'm having more bad days than good days as time goes along.
I want to thank you so much for sharing with me how you are handling this dreaded disease. I have no one to talk to about this, which was the same when I had my 2-level fusion. I met all kind of people with a 1 level fusion, but none with a 2-level. And most of the people with a 1 level fusion had healed nicely and were almost like new.
If there's anyone out there that could advise what steps I need to look at to claim disability, I'd surely appreciate it!
And I'll keep you in my prayers, Kimberly.
It is strange how things can be. Today was a bad day. I had to reread my words. LOL!! But, hearing from you and hearing the appreciation made it better. Sometimes, dealing with the mental issue, of all of this, is just as bad, as the physical pain. It is hard, for people, to understand what one goes through with chronic pain that is not visible. Nothing on the outside shows. Put on a big smile and no one would even know there was anything going on inside.
But, life goes on. My children are home, from school, and they are my inspiration.
As for disability. I was very lucky. My doctor immediately claimed I would be disabled, with the arachnoditis. I called my local social security office and had them send papers to fill out. That is what is the hardest. I, also, believe you can order them online.
When you start, keep a copy of EVERYTHING! Get you a big box. You will have to fill out tons of paperwork. I think this is where people get discouraged. Most people I know have to appeal, but I was so fortunate. I went before a board that included a doctor, nurse, whatever you call the kind of person to see what type of work you could possibly do or continue doing, judge type person and couple of others. They heard my case. I had every pc of paper the doctors and hospital could provide and was granted my disability, on the spot. I sat for over two hours. I think the squirming trying to stay comfortable helped. HAHa!!
If you have a doctor sign saying you are disabled, all you have left is the paperwork.
Look on spineuniverse.com at what they say about arachnoditis. It states it is disabling and nothing can be done about it, but learning to keep control of the pain. Find as much info and print out and send with application alone with your doctors diagnosis.
Also, be careful with the pain meds. They are so addicting. I hate when I am told you are not addicted, however, your body becomes depended, on them, for a certain quaility of life. Well, that is bull. You body becomes addicted. Learn your medication and what it does to your body, in the long run. Something that may make you feel better now may have worse side affects, later. As for me, I plan on watching my children marry and have children. Find a pain management doctor who cares for you, mind, body and spirit. I had a horrible experience, with my first one. It makes all the difference when you have someone who cares and is not just there for the money and hauls you in and out like a herd of cows, through some shoot, at a sale.
I never have great days, anymore, but I do have good ones. I try to do something productive everyday. To someone else it may not seem like much, but sometimes just getting out, for a walk, can be a blessing. I slipped on my waterhose this morning, trying to spray off the carport and thought someone had stuck a hot steel rod through me and down my legs. I spent about an hour crying in bed and decided my nose being stopped up was not helping. So, I get up one more time!!!
It would be nice to keep in touch, not to have someone to complain to, but who understands. If you would like to chat sometimes my IM is sleeplessbrunette and email is ***@****. I'm not sure if I am suppose to give that out on here, but I just did. Oh well.
Hope to hear back from you,
I have just been diagnosis with Arachnoiditis about 1 month ago. I am having a hard time to find a Dr. to see me so I just live with it. I am now waiting for another Dr. to see me from John Hopskins in Balitimore Md. I have been reading a lot and what I read I don't like. They put me off work but I am bond and determine to go back to work know matter how bad it hurts. But from what I read that might not be an option. I am 57 and had 5 back surgies and all of those shots that they give you back then 25 years ago for pain. I had know problem with my back until last Nov when I triped over some wheels on a tray at work. I somehow tristed my back and it has been down hill sense. I can't see how that can get this whole thing started but I am not a Dr. Just need to know what I am up against and what to expect. Nice to see there are more out there with this problem at least someone to talk to when things get bad.
Thanks for listening RoxyL
Good Morning Roxy,
You are in for lots of pain. No use pretending all is going to be easy, because it is not. I am not one to sugar coat things. I want the truth, so it can be dealt with. I would like to say it is like a bed of roses. There is beauty around, but with thorns. It is all in how we handle and take care of it.
I, too, have had multiple surg, with the shots, tests and so on. All of it forms this scar tissue around your arachnoid something lining...And, in all I have read there is no cure and not much that can be done. But, don't ever give up hope.
I haven't tried the pain med pump or spinal stimulartor. I'm 41 and just hate to be cut on, again. I have heard great things about both, as well, bad. I think it just depends on the individual person. I take pain and depression meds everyday. I try to keep my pain down, without being dopped up, and do what I want when I am able. I usually have to pay for it, but I have found for my own peace of mind, I have to go on. I was given a suggestion from a med student, on this forum, to look into cranial osteopathy. I have never heard of it, but getting info. I want to keep trying. He/She said they would get back, with other info. They just might be our little internet angel.
Not to say, I haven't spent my number of days laying, in bed, crying. And, yes, feeling sorry for myself and family. But, it doesn't do me or them any good. Sometimes, I have to really watch myself not to allow the darn depression to take over. Life goes on. I do better to focus on the good things in life and we all have something good. My children are my inspiration. They give me my will to keep moving. Find yours!!
I have found useful info on spineuniverse.com.
Know you are not alone in this and you are not crazy! What you are feeling is real!!
Hope you have a Happy Easter,
Thank you for answing my question. How long have you ben this way? I have had two Dr's turn me down and now I am waiting on another one to see me. I am like you I don't want any pain pills to make me sleepy. I would like to go back to work but at this point I don't know. My spine is like a question mark because of the last fusion something has went wrong. The thing that really bothers me is the way I feel after I get a showe or a bath I have to lay down is this normal. Hope you feel better too and hope you had a nice Easter.
Will anyone who was diagnosed with Arachnoiditis please tell me how it was diagnosed and what type of doctor diagnosed it? What type of testing was done to confirm the diagnosis? I've read all the comments and can identify with the daily pain and appreciate the excellent attitudes displayed...living each day to the fullest. I guess I needed a boost. I really would appreciate some information on how it's diagnosed.
Good Morning everyone,
I have dealt with this for about 3-4 years. I have had 4 surgeries, which they claim is the cause. My first being in 2000, I think!! My diagnoses came from a neurologist (I'm not good with spelling), after several test. I had a CT, MRI, EMG and something else that had to do with the muscle, similar to the EMG.
I am treated for the pain, something to sleep (which I haven't found anything to brag about) and depression. But, try not to take much medicine. Oh, but I don't miss my crazy meds. HA!! I have tried several different types of med and have found 3-4 Loratab 10/500 a day keeps me dealing with it. I have had bad side effects with others. I never have a day without pain and guess I could take something stronger, but hate the way it makes me feel.
I know the Loratabs are bad on the liver, so I keep my dose below the danger zone and have blood work done, yearly. I take Welbrutrin 300mg and Effexor XR 150mg daily. I hate the Effexor and getting ready to slowly get off. I have gain 30 pounds, in 2 years, and if I miss a dose I am so sick to stomach and dzzy, till I can't function. So, my doctor and I are working on that. I have bad problem not being able to sleep. I have tried lots of different things. Either they make me so tired, in day, or I am doing things I don't remember. But, I will never give up trying to feel better.
Well ya'll have a great day! Gone eat some boiled crawfish and crabs my son brought me last night.
I know what you mean about finding something to help with sleep. I think I've been prescribed everything on the market. I've tried all the new ones. Lunesta worked for 1 night; the next night I did not sleep. I've recently been given Roserem. It worked for a few nights, but now I'm up with Abe Lincoln and the beaver just like in the commercial. I've have a total of 5 hours sleep in the past 3 days. I'm ready to crawl the walls. But, I did find that using a relaxation CD helps turn the brain off from all the fleeting thoughts.
I wish you luck in finding a remedy. Just wanted to let you know that I empathize with you. I often wonder if a sleep study should be done. You might ask your doctor about it.
I am new here and was just reading the posts for the first time when I felt it was important to respond to the question regarding how to even begin when comes to disabilty. I always hear from other people how difficult, time consuming, and exaserbating it can be so to offer some encouragement I will tell you what happened when I applied. I contacted the Social Security Administration by phone and answered a few easy questions. They sent me an application to fill out and return to the office which I did, the one thing I did with the application was to include my medical records and I believe this helped a lot!!! Everything was there for them to review right away, and I didn't have to wait for months while they got the records themselves. I then received a notice in the mail of when I was to have an interview which took place completely over the phone. About a month later I received 2 copies of another type of form that I was supposed to fill out and have someone close to me also complete, I gave one to my Mother, but a spouse, adult child, other relative, etc... would be fine also. This form was mostly about day to day activities and how I could do things now compared to before my illness/injury. I promptly returned that form and within a month I received my acceptance letter. From start to finnish the process took me 2 months and went very smoothly. I did not need to involve an attorney or anyone else. I was working as a RN before and also have rheumatoid arthritis but at the time I received the didability I did not have arachnoiditis and was just going in for the first of five back surgeries. I did have knee replaced 4 months prior to applying. I believe that they really base the descision on whether you will be able to work in the same type of capacity or a similar capacity/career. If you answer everything honestly and in accordance with what your medical records show and your disability prohibits you from working a job that is the same type of work or similar then you should not have to go through such a struggle like some people seem to get disability. I hope is goes smoothly for you, there is more that enough going on in your life that to deal with that kind of stress.
Good Morning to all,
I just wanted to confirm Sherri's information on SS Disability. Mine took a little longer, but, also, very lucky not to involve an attorney. However, if you should need legal help and can't afford it, I would think, all states have legal aide, Louisiana does. There were times I had questions and got all the answers I needed, without charge. I am a single mom, of three, and at the time had no money coming in. Thank God for good parents!!
The most important thing is to answer every question, send all of your medical records and return ASAP. It is easier to get copies of your records, from doctors and hospitals, than having to wait for SS to send for them. Make sure you make copies of everything and don't get frustrated when or if you recieve another book, of questions, that have about the same questions
I had to do an interview in front of several people. It was a judge, his secretary, someone who kept all the notes, 2?? doctors, career person, don't remember exactly, but all were very nice and made me feel very comfortable.
I think the delay, with most people, is not completeing applications properly, not sending in second or third set of paperwork, thinking they have already answered the same questions, or the wait on medical records, which shouldn't take more than a couple of days, if you do it yourself. A friend drove me three hours away to get my copies, from the hospital, which saved time, in the long run.
I would like to know what some of ya'll take for pain and help for sleeping. DeniseMarie I sent you a post on front page. Well, I am looking out the window and it is a beautiful day, I think I might try some work in my flower
bed. My grandmother believes everyone should get a couple of healthy sunshine a day. And, she is 87, has never been sick and still kicking. And, her moma lived to be 98, so I think there might be something to it.
Ya'll have great day,
During my second rotation in Iraq, I injurred my back doing something that I did most everyday of my military carreer. I was simply moving aircraft parts to get the aircraft ready for regular maintenance. I was medivacd out of theater after having bowel and bladder control problems, and was eventually shipped back to my home station at Ft. Hood, Texas. Six months later, I had a fusion of L2/L3 and L5/S1.
Last year, at the age of 33, I was diagnosed with adhesive arachnoiditis at L1/L2/L3. This was after my failed back surgery from October 2004. By June 2006, I had the revision of my L2/L3 fuse plus L1/L2 had to be fused. After my diagnosis, I was probably like everyone else..... that blank stare on my face.
My new doctor, the one that did my 2006 surgery, was stationed in Iraq with a pain management doctor in Iraq, and had become aware of a spinal chord stimulator and thought that I would be a candidate. I saw the pain doctor down at Brooke Army Medical Center where I went through the trial.
Prior to this trial, I was taking Morphene, Oxycontin, Valium, Percocet, Flexeril, and a few others that I couldn't even pronounce. I was taking all of that everyday, all the time. I hated that drug induced stupor that I was in. During the trial, I was able to go several days without any drugs at all. I got my permanent Medtronic stimulator in August 2006. This was the non-rechargable 5 year battery. Six months later, I had to get a new battery and went with the rechargable. That's not to say the batteries don't last for 5 years, it's just how complex my program had to be. The rechargable units can go as long as 14 days before recharge, and it's something that you can do as you go about your "normal" routine. I can only go about every other day before I have to recharge though.
Even with the limitations the electrical equipment has put on me, I can walk on my own power. I still have my walker just in case the battery fails. Sometimes I can go several days without any pain meds, but other times, I have to take it throughout the day. I only need the Valium, Flexeril, and Percocet!! Those of you out there that might be a candidate for the electrical implant, don't completely dismiss it. I can't and won't say it is for everybody, but for me.... I have my mind back, and I can drive again (for now).
Like everyone else out there, I am scared of the prognosis of this disease. All those things that I took for granted prior to this whole thing.... I never realized just how many things I did take for granted. Simple things like putting my shoes on. Bless her heart, my wife still puts my boots on for me when I have to go in to work.... yes, I am still in the Army, but will soon be medically outed. Scared doesn't really define what my wife and I feel about this disease. We can't get a lot of our questions answered simply because there are no answers. I try to hold my head up high, but honestly, I'm not as strong as you are Kimberly. Three years ago this May is when my wife and I had our lives turned upside down.
We don't know how long this implant will keep the pain at bay, but for now..... The best thing throughout this whole posting from everyone is "One day at a time". We are prepaired for the worst, but pray for the best. Bless all of you out there and know that even though we don't see each other face to face, we are stronger now with each other than we were before. If anyone wants to start a group e-mail, you can include me in there. Feel free to e-mail me at ***@****.
I would love to start a group email. I think one of my most emotional things I go through is no one can see anything is wrong. Not that I would want that, but I can tell some think I am crazy when my steps are about just inches apart. It helps me to talk to others who understand. I am glad to hear you have found something to relieve your pain. I am still not sure I could go through being cut on again. I search the internet hours weekly, for something new. I have come across some interesting things. One of the therapies I have found is called Prolotherapy. It is injections to help speed up the healing of inflamation. It claims to rid the pain, completely. I am looking into it more. This is the only thing I have EVER come across that gives hope.
Today, was not a good day. I did not do very much. I fell, about 2-3 weeks ago. I have a new hurt going on and probably need to go to the doctor. I have waited thinking I was sore from the fall.
I don't know if I am strong or just hard headed. I do know if I had done what the doctors said, I would be in bed all the time. At the time my oldest was still home. I am a single mom, of three. We live on ten acres with horses, dogs, cats and, until a year ago, a herd of bout 25 goats. I am lucky my children are very compassionate people and help me very much. I, also, have my very best friend who has stuck by me through it all. Poor 'ol thing has had to catch the hell I probably would have put a husband through!!! Ha!Ha! But, he still comes around, so he must like it. heehee He has been a life saver.
I do my best to get up and move, even if it is a small walk, around the yard. I hate the pain and hate the things it has taken away, from me and my family. However, I can say I love being home with and for the kids. When my daddy was sick I was with him constantly and at his bed side when he died. I have found good in being able to stay home compared to having to work all the time. My two girls and I lay around and talk all the time. I don't think I would have that time if I worked.
My life has changed and I have to accept it. But, I do what I can, when I can, even knowing I will pay dearly for it. I will give you a hello on your email.
Have a good one!!
Hello all, I found this page looking for information on how to find a good Neurologist. I am 46 and 16 months ago had a fusion L4, L5 I still have severe issues with L5, S1 and also Stenosis above my fusion. I went through all the physical therapy and walked everyday, thinking all the while that this is what needed to happen to keep me well, I did great after surgery and my family and I were very happy to be through it.
I realized I would never be the same but before surgery I could not even make it down the isle at the grocery store. Now I was feeling better no more back pain the pain I suffered for so many years was gone, I could walk again as well. Three or four months ago I noticed my legs had really stayed numb, especially the left one. They were numb to the touch but I could feel pain. The sparks started in the left leg and it progressed rapidly, the longer I stood or the more I walked the more intense the sparks. I learned to stand like a flamingo giving relief for a moment until I set my leg to the ground again.
I now feel the full intense pain of damaged Nerves I guess. The lightening bolts and sparks and intense pain is all I can describe, I walk as far as I can then I am done. It amazes me how much it hurts to touch my skin; I have learned that is the wow you have done to much today pain, which stays for days afterwards. I took Nurotin for awhile and developed tremendous joint pain in my hands and feet, switched me to Lyrica , but the joint pain remains. I have not changed as I am awaiting an appointment with a neurologist. My Spine surgeon said it is where I needed to be. I also take Vicodan for pain only 3 a day as I hate the pan meds.
I truly hope that a neurologist can help me or should I see a neurosurgeon? I guess I’m looking for some relief as my life needs to keep moving, my husband is a Veteran 100% disabled from a bad Parachute jump. So it is me that my family needs to keep the wagons circled.
Any advise would be wonderful as I see a few of you have kept the brightest of thoughts, myself I just broke down and cried, I hope to be in your bright spot as well soon enough.
Thanks for reading
hi , i am from México and yesterday i was diagnosed for Arachnoiditis, the doctor wasn´t sure because in the magnetic resonance studies, didn´t whor exactly anything very clear.. so im worry .. im 25 years and i have been having pain in the hole body more in the lower and upper body, arms, legs,Tingling, numbness, or weakness in the legs.But i dont know why i feel i have to go again to the dr ( i dont know how to say it in english) that knows about bones.. in spanish is Ortopedista....i have been reading about this desease in the web, and i haven´t suffer a trauma i dont remember, the doctor told me that it might be a result of a fall when i was a kid or something like that... do you thinks so??... what can i do to be sure look for second opinion...go to another doctor specialized in the spine not in the nerves neuro surgean? is the word? i dont know what to do and the pain is not nice... not to live with it every day! help me! please!
Did you start the email sight to keep in touch with other arachnoids (that's what a few of us call ourselves)? I would really like to join?
I am suffering from this disease since about 2000. I have tried all kinds of pain meds and the most help I get is from Norco 10/325 4-5 times a day. I was prescibed Methadone recently and hate the way it feels and have to stop.
Hello, My name is Derek and I too have arachnoiditis along with spinal fusion (l-3 to s-1), it took place in 1993 I believe. I refused to except My sitsuation and went to lots of doctors but then visited a Doctor in Houston that said I didnt have a realistic view of My life as it is now, the old one is gone and this is a brand new one, except it for as the new life becomes the norm (instead of comparing it to the old one) You will spend more time doing other things instead of being depressed that You dont feel as good as You did! I went through this for years and when the doctor said this (in slightly different words) I cried and His nurse comforted Me (at the time I was a 24 year old man, now 40) But that was the change that I needed, I still remember that day as a sad/beautiful but needed day! I was different as I went home but I still needed to find a med that I excepted and that was hard because I dispise meds (because of My Dads drinking and some drugs, He sounded tipsy every night so I developed a hatred for things like that) but I had to take the lesser of the 2-3 evil's!
As I said We are new people and We now have new friends like each other and doctors with meds and new thoughts of fear of "being a burden on My love ones" and "can I take this much more" But let Me tell You something very important, You are not alone in this, You have others praying for You and willing to give advise but You need to stay strong and understand that If You dont dwell on the pain it will probably get out of Your mind quicker than If You think "oh I hate this"! The pain may not go away but You can get it out of Your mind at times and 'MAN O MAN, THOSE ARE SPECIAL"
I dont know if I helped any with these words But I did say a prayer for all pain sufferers! May Heavenly Father bless You all! Your new friend Derek B
I work for a hospital and I have arachnoiditis. I believe it happened when I had a morophine block with my knee replacement. I am allergic to Morphine and they shot it into my spine anyway. I have had back surgery but didn't have a problem after. Its now three years since my back surgery, but about a 1 1/2 for my knee replacement. The last mylograham I had showed slight clumping and possible arachnoiditis. I am in so much pain by the end of my work week, its almost impossible to walk back to my car. My feet feel as if they are swollen as big and they can get then I am walking on landscaping rocks. Its very painful. My neurologist so far as not acknowledge my arachnoiditis. I feel maybe because they are afraid I would blame someone. I dont want to blame anyone, I want help. I feel I can not do my job as I use to, the pain level is extreme at times. Do you find that there are worse times than others with the pain from Arachnoiditis? I need to know that, for sometimes its just pins and needles in my legs I feel. Not the cramping or sharp pain. Does anyone know a good doctor in the Houston Medical Center who could give me a diagnosis? I will probably have to go outside my hospital system to get help. If anyone knows someone close to where I am...Houston. Please let me know. I feel I qualify for disability for my job is mainly on my feet all day long and lots of walking. Thank you for your help!
Try Stephen Esses in the medCenter, he is great.
is anyone on this site. I was diagnosis with arachnoiditis last week. I was getting back on my feet then out of nowhere starting having pain on my right side. My doctor diagnosis me with this disorder and I was floored when I returned home and looked it up on the internet. I workout everyday by swimming and weights. I have some of the symptoms that I read about but others i don't have . Will I experience all of them? Can I continue working out? I refuse anymore surgeries. Someone tell me there is an answer to this craziness. I didn't work my *** off to end up retired and in a bed. I need to know if anyone has had less pain or symptoms? Has anyone found relief? Looking for answers? Lastofsix