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Has anyone been diagnosed with arachnoidosis?

Started by reginagrippo on 05/27/2010 3:16am

I have just joined this advice and support group, hoping to get some helpful advice on coping with arachnoiditis. I am a baby boomer who had to stop working at age 48 due to long time back problems. After three major spine surgeries (not including spinal fusion at age fifteen) I am left dealing with this very painful problem. Is there anyone out there that knows what I'm going through?

Regina

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Hi Regina,Arachnoiditis can be adhesive and non adhesive either way this can be very painful as far as i know there is no successful outlook from this type of surgery ,so Dr's,don't like to perform it. This comes about from failed back syndrome,from the lumbar punctures (myelograms chemicals ) it is really a scar tissue that spreads and sometimes adheres to nerves creating much pain. Look up fibromialgia ,some say that arachnoiditis is the cause of trauma to the nerves (scar tissue )causing them to always be in pain. Get better and don't let the pain take over your life.I understand what you are going through . Bye

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Regina,

I haven't been clinically diagnosed but know that it's there. I did start up a discussion about it a few weeks ago and there are some great posts in it. The title I believe is "electrical charge when moving anyone?". Surprisingly there are quite a few people out there that have this ick everytime they move. I have been just refered to a neurologist for mine. I needed a good neuro anyways, might as well go and get my second opinion on my back too! I haven't had surgery yet and am hoping that I can put it off for at least a few years, so my arachnoiditis isn't from surgery, but could just be from all the epidurals I've had in the past 5-6 years, or could just be because I've slipped that far into the good old spine to cause a tear with the spurs.
One thing i know that is controversial among alot of people that does work on the electrical charges is marijuana. I'm already on Lyrica that keeps my nerves occupied, but doesn't keep the electricity from zapping me. Marijuana is safe and effective to use at home and I personally use a vaporizor which is gentle on the lungs, which is nice because I am still fighting with pnemonia and only out of the hospital for 7 days now. It gives me a gentle body buzz which covers up the spikes that you feel with the charges. In fact, I'm sitting here nice and comfy, just a little pain in left sciatica, but that's a new pain due to the latest slippage. I'm still aware of what I'm doing and what I'm saying, so it's not messing with my head which is what hydrocodone and morphine do to me. I'm actually breaking the law because I'm not in a medicinal state yet. We still have to leave it up to legislature to be nice and not step on their toes, but it was approved by the state board of health. I am a deeply religious person too, and believe that God gave this to us to use in soo many ways....I also believe deeply in the power of prayer.

Go read my post on electrical charge and you'll find a bunch of great responses from a bunch of wonderful people!

hugs to you!

Wendi

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Thank you Hector and Wendi. I have adhesive arachnoiditis and I believe I am lucky in that my pain is intermittent. It is terrible pain that takes my breath away. My big concern is the progressive numbness. I have lost sensation in most of my right foot to mid calf. And it is starting in my left foot too.
I read the comments that you mentioned, Wendi. This is not the way I planned on spending my retirement years. Lyrica helps me too. My main pain med is Darvocette. Would you believe it works better than Vicodin? My pain doc had me on Avinza for a while but I wanted to get off it. It worked well but I didn't want to take a time released narcotic for intermittent pain.

I hope you get what you need to feel better. Try to avoid surgery as long as you can. When you are fused you lose movement in subtle ways. I am fused from T4 to the pelvis. My motion loss is quite blatant.
Thanks for the info. Regina

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Thank you Hector and Wendi. I have adhesive arachnoiditis and I believe I am lucky in that my pain is intermittent. It is terrible pain that takes my breath away. My big concern is the progressive numbness. I have lost sensation in most of my right foot to mid calf. And it is starting in my left foot too.
I read the comments that you mentioned, Wendi. This is not the way I planned on spending my retirement years. Lyrica helps me too. My main pain med is Darvocette. Would you believe it works better than Vicodin? My pain doc had me on Avinza for a while but I wanted to get off it. It worked well but I didn't want to take a time released narcotic for intermittent pain.

I hope you get what you need to feel better. Try to avoid surgery as long as you can. When you are fused you lose movement in subtle ways. I am fused from T4 to the pelvis. My motion loss is quite blatant.
Thanks for the info. Regina

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I have Arachnoiditis. I had a cervical fusion in 2003 and when the brace came off I had a ruptured disc that I had surgery on. I have numbness in my left outer part of my left leg and my foot. Sometimes I would get sharp pains in my big toe and also my big toe would move up & down, like it had a life of it's own LOL. Having epidurls can lead to Aracn. also. In my day, having had a spinal with each of my 3 children, I didn't connect that it also was called an epidurl. I did have 2 epidurls to help with the pain . So that means I have had a total of 5, counting childbirth. I started going to Dr. when I was in my early thirties. I firmly believe that those epidurls were the start of this condition.I also have arthritis. Years back, I signed a release at a Spine clinic I was going to so they could publish my x rays in medical journals because they said I have a spine like an old woman. I have been on a lot of meds for the last 10 years and I am now on Methodone for the pain. Without that, I couldn"t stand or walk. It helps quite a bit and you don't feel high or dizzy or anything. I found a website you can type in that will explain every word in your MRI that may be helpful, I was waiting to have a spinal cord stimulator implant before I was able to read my own MRI. Now I do NOT want it.. Up till a year ago I was working, then when I went for my 3rd back shot, I asked the Dr. if maybe he could put it in another location. He pulled up my MRI and turned to me and says " I can't give you this shot, you have arachnoiditis". That's how I found out. Just shows you that he never even read my MRI until I said something. And my Dr. still wanted to send me for more shots. I have had this for 2 years according to the MRI.and my Dr. never said anything to me. Epidurls and back surgery will make it worse. I don't know what kind of Dr. you are seeing, but it should be a Neuroligest, which I have an appt. to see in June. You said that you didn't want to spend your retirement like this, but I didn't either. I'm still trying to convence myself I have this. I always think "this doesn't happen to people like me, it only happens to other people", LOL I want to give you that MRI address. adriaanliebenberg mri terminology. If you have a copy of your MRI, this will explain all those words that you didn't no what it meant. I wish you the very best and am anxious to hear from you. Will type at you later my friend, Jan

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Thank you Jan for the info. I had to research every huge word on my own when I read my MRI. Took me forever to figure out the difference between this big word and that big word. I think most pain mgmt doctors don't even know what these words mean. I know they don't look at our MRIs or even CT scans. I had one tell me that I just had a hernaited disc. It wasn't just herniated, it prolapsed and was a flat as a worm trying to crawl out of your fingers while you are trying to bait a hook. Dumb asses. I just wish I had a tape recorder going when he attempted to answer my question, so I could sue the pants off of them for malpractice! I believe that pain management caused my arachnoiditis.....one dr only spent 9 secs with me on the table..tell me he wasn't stabbing in the dark. floriscope time was 9 seconds. I have my pain records, but only from the past year. I plan on getting them all when the lady who handles records comes back to work.
I believe that everyone who has gotten an MRI needs to get a copy of it from radiology. They will put it on a CD and the reports will be on the CD as well. I have to go back to get my latest CT scans from when I was in the hospital, even though they are of my lungs, there will be pics of my spine too, kinda hard to eliminate the spine in scans! LOL

My best to all,

Wendi

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Jan,

Can you type out the web address again? I tried the site and got no where...doesn't exist.

Thanks in advance,

Wendi

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Google in... adriaanliebenberg mri terminology. That will take you right there and you will see the link for MRI and CT Scans. Regards, Jan

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Hi wendi, I haven't heard from you and just wanted to know how you are doing. Have you gone to COFWA yet? If not, It is a group of people just like us and you will find so much info. there. First, type in COFWA and then go to the links. You will find out more than you really want to know. But it is what it is! It really is the best site because they are well known and won"t sugar coat anything. There are some sites on the fine world wide web that are not exactly knowledgable. Let me know how you're doing. Jan

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Hi Jan,

Thanks for thinking of me! No, I haven't been to COFWA yet. I over-did things during the weekend of the 4th and have been paying for it since, so I haven't been around much. I do have it written down so I won't forget. I'm only up for a few minutes waiting for meds to kick in again and maybe drop me on my rear end! I'll keep in touch.

Wendi

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Hi, I am 82, years of age, I have Adhesive Arachnoiditis, I have had it since i was nearly 55, i had a mylogram, the dye myodil was injected into my spine, since then i have had 3 fusions, +epidural injections, then about 7 years later i had 3 rods and 4 Hartshill triangles put in my spine. for 2 years the nurse was comeing out to me it did not heal up , the nurse had to change the dressings it was discharging all the time, then i was sent for plastik surgery, to this day it keeps filling up were the plastik surgeone had put a circle of skin,, but the pain i have, i cant describe ,on good days [ ha ] i put my make up on and i am in a wheelchair indoors and out, i look as if there is nothing wrong with me, i have more pain killers than Glaxo the only name that comes to mind,I put my name down to have test with canibis for the pain, but did not hear from them, A on call GP came out to me a week ago, and he gave me a precription for Gabapentin, and i must say it has worked i have had no pain since it takes a few days to get used to it, but at this moment in time, i have no pain, i dont no how long it will last, but after all these years and many many diff medications,I just hope it does, It is worth a try if you have never had it, the GP said it is not a pain killer i think he said it is for the nerve endings I hope u try it , my daughter had to go to 3 chemists before she found 1 that had it, good luck. Jean xx

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Hi Regina, you would be so surprised at how many of us there are. I joined a support group on line called COFWA, Circle of Friends with Arachnoiditis. They are a group of people like you and me and can answer any problem you have. You can rant and rave, cry, or just talk. You can be added to Face book as a friend to some and have someone to talk to at 3:00 in the morning when you can't sleep. Just google COFWA and then you can join. First you will be asked to write a brief story of how you think you got it, how you're coping etc... Then you submit it and the moderator of the group will read and reserch, then you will be approved and introduced to everyone. They try to keep the rift raft out of the group to protect all of us on line and in our e mails etc...you will find many friends and talk about your family, kids, the husband. Then when some one gets sick, goes into the hospital, graduates or anything we can follow you through the site and get to know you personally. You need advice, there it is. honest no sugar coating , it is what it is. I take gabapentin and methadone for pain. Gab. calms the inflamed nerve ends and meth. is a very safe inexpensive medicine for the pain. You don't get high or dizzy or anything, it just helps take pain away. My set back with it is you lose so much weight. I lost 40 lbs. and look sickly because of it. You just don't want to eat. Food takes on a whole new meaning... ZERO. There are some people that can't tolerate methadone. It was that or morphine for me. You will notice we tend to get off track LOL. You take care of yourself. I'm on facebook if you want to meet. Soft angel wing hugs Janice Lucas

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I would like to say hi to 3 ladies Regina, wendiann24, and Janiceohio, I hope i have that wright ha, after reading what you have wrote i just dont no what to say, am i wright in thinking you are all 3 from the USA, I am from the UK, and i dont think for 1 min they would let me have methadone, it is only given to people who are drug addicts, i think 2 help them get off drugs. when i think about it all the medication [ drugs ha ] i am on, i must be a druggy,, like i mentioned canibis, was dicussed, but i never heard any more about it, I bcame a member of COFWA, sonetime ago, but i have moved since then, so all my paperwork got mislaid, when u have to have other ppeople to help you, things get thrown away, I am a hoarder, I was a member of the Arachnoiditis Trust, over here for many years, they were great,you could phone them any time when you needed to talk to someone, but they finished a few years ago,It has bean good to read all the things these ladies have had to say, i am so glad to ha ve found this site ,I am on Face Book, over here, i have recently asked on it has anyone got Arachnoiditis, but got no reply,if u want my em adress i will give it to any of you,I will be thinking of you, i have enjoyed finding you, hope you keep pain free fingers x , love to you all. jean, xxxxxxxxxx

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Hi Jean, this is Janice. If you were once a member of COFWA get back on it. We have such a great time talking to people from France, the carribean islands, London etc... Especially sence you dont have your phone group anymore.I am sure the Moderators will have you on file. We have members that leave and come back after not hearing from them in several years. Read my name at the end of one of my letters and type it in on facebook. Nice to hear from an older lady such as yourself who is full of advice and knowledge of this disease and more. Will be nice to talk to you. Janice

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Hi, to Janice, and anyone who has or dont knowe, what is wrong with them, they have a lot of pain but your doc, or whoever you see they dont tell you that you have got Arachnoiditis, unless you ask I had to ask, i saw a program on tv many years ago about a lady who had it, I had never heard that word before it took me a long time before i could say it, lol, but after seeing the lady on tv who had it and the pain she was in,Now for nearly 29 years [ in jan ] i have the pain that she was in, so asked my Doc, had i got , the word was so hard for me to say lol. but he new what i was trying to say, and he said to me have you bean watching TV I said yes, he said yes you have but ask your consultent when you see him, i said i will and im sure he will tell me, so I saw my consultent, and asked him he got all my notes out ,looked at me and said yes u have got Adhsive Arachnoiditis, but he was not involved, he had only seen me and sent me to a drwho gave me pain killers and then he sent me to , dont no how to spell that word, but i think ive gone on to mutch, hope you all understand, Ive just rememberd Janice, I will get back in toutch with COFWA,, I do remember they were very good, Now people no they have to ask if they think what is wrong with them is something they have heard about ASK they dont just tell you, hope you all have a pain free week if poss, fingers xxxxxx love to you Jan, xx and everyone, take care ,,, JEAN,ps I have relations in the US, xx

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Hi Jean and Everyone. You are right about the Dr.s not wanting to say that word "ARACHNOIDITIS". The doctors sugarcoat the disease with ... Failed back syndrome, and something else that I can't think of right now. The reason being because they no that there is nothing that can be done for you except to give you pain meds, pain pump, spinal cord stimulator. And many of us will develope Cauda equina syndrome. That's where we loose feeling in the saddle area and wind up having to wear diapers or mostly bags and cathaters and get infections etc... Hopefully we won't be totaly paralized. This is not a pretty picture but it is what it is! Now some people will read this and connect with certain feelings they might be experencing. If this is so, GO to your Doctor NOW! Surgery still may be done to repair it before it's to late. I have numbness in my left leg, foot and toes. Stinging pain at times, muscle spasms,in my feet and legs. Sciatic nerve pain in my right side going down butt, thigh and leg. Sometimes I have a jerking of my leg or hand/arm. I just found out I also have severe scoliosis. I was never told I even had Scoliosis let alone in the severe stage. I can't run around to the garage sales let alone the grocery store anymore. By the time I walk to the back of the store I've had it. If I do try to shop, I'll pay for it the next 2-3 days in bed. I struggle with the house work and laundry. I do it, but it takes me the whole day to accomplish what I used to do in a few hours. It's hard for me to stand at the sink and do dishes or cook.I used to be a cook at my sons cafeteria in 2008-9 in the Ohio State lottery bldg. for a population of 600. I was at work downtown at 4:30 am. for breakfast and then I STARTED ON LUNCH AND BAKED CAKES AND EVERY THING WAS HOME MADE FROM SOUPS TO THE ROAST PORK AND REDSKIN potatoes. The pain was getting so bad. I started getting epidurls in my spine. this just inhanced the disease. I dropped really fast after that. Downhill I went in one year.Now I use a cane ( a pretty floral one) and I can't even cook for me and my husband. I graduated from Motrin to tylonal 2, 3, vicodine, etc. I an now on Methadone for the pain and it does fairly well. The only setback is that you completely loose your appitite. I look anorexic now. I will wind up in the hosp. pretty soon if this keeps up.I also take Gabapintin ( Neuronton) for the nerve pain. That's the kicker that all should be on. It is fantastic for the pain. Well, maybe someone can relate to some of what I just wrote and seek medical attention. A Neurologist is who you need. A MRI. Then go to www. adriaanliebenberg termonology and look up all the stuff on your mri. It will define everything you don't want to really know! Good Luck to everyone, and Jean, please, go to COFWA. We'll talk soon. Be Well, Janice

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