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ARACHNOIDITIS

Started by GERT on 02/02/2010 1:05pm

I THINK I HAVE ARACHNOIDITIS, BUT HAVE NEVER BEEN DIAGNOISED. MY DR. CALLS IT FIBROMYALGIA. I AM ON SAVELLA, CYMBALTA AND HAVE TAKEN THE OTHER DRUGS WITH NO RESULTS. HOW CAN I BE CHECKED FOR THIS. I HAVE ALL THE SX AND HAVE HAD ALL THE CAUSES OF THIS DISORDER.

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Dear Gert, I am right ... from skeetelmore65
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Gert,

Sorry to hear what you are going through. I pulled the following info about Arachnoiditis for you:

The predominant symptom of arachnoiditis is chronic and persistent pain in the lower back, lower limbs or, in severe cases, throughout the entire body. Other symptoms may include:

* Tingling, numbness, or weakness in the legs
* Bizarre sensations such as insects crawling on the skin or water trickling down the leg
* Severe shooting pain (which some liken to an electric shock sensation)
* Muscle cramps, spasms, and uncontrollable twitching
* Bladder, bowel, and/or sexual dysfunction

If the disease progresses, symptoms may become more severe or even permanent. This disorder can be very debilitating, as the pain is constant and intractable. Most people with arachnoiditis are unable to work and have significant disability.

You can learn more here: Arachnoiditis

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Arachnoiditis and fibromyalgia are different diseases. He is treating you for the fibro, if its not working, I would go see a neurosurgeon for a consultation. I believe they are the ones who treat arachnoiditis, but I would not give up until you find a diagnosis that you comfortable with.

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I HAVE SEEN 3 DOCTORS IN LAST THREE WEEKS. ONE SAID HE WAS REFERRING ME TO PAIN MANAGEMENT DR. HEARD NOTHING ELSE. SAW FAMILY DR. LAST THURSDAY. HE WAS TO SET UP PHYSICAL THERAPY. HEARD NOTHING ELSE. IF THIS BE ARACHNOIDITIS, ADHESIONS, OR FIBROMYALGIA, ETC????? NO ONE SHOULD NOT HAVE TO SUFFER THIS MUCH PAIN EVERY DAY AND NIGHT' I CANNOT EVEN BEND AS I DID IN MY PHOTO. PAIN PILLS HELP VERY LITTLE FOR PAIN, BUT SHUTS DOWN MY BOWELS. I THEN ADD MAGCITRATE TO MY DAILY MEDS. THANKS FOR YOUR COMMENT.

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Wow... it sounds extremely frustrated. What state are you in? Do you have insurance to cover visiting a specialist. I cansend some docs I know are solid.... if interested. Have you had an MRI of your spine? Without knowing your situation, It doesn't sound like you are getting the appropriate care. BUT its important you take control... demand a referral and stay on it. I have been living wiht chronic back and neck pain for 3 years and I'm only 38.... I can barely pick up my kids. I completely understand your frustration.

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I HAVE MEDICARE AND SECONDARY INSURANCE. I AM STILL READING ON ALL CONDITIONS OF LOWER BACK, PELVIC AND LEG PAIN COMBINED WITH EXTREME EXHAUSTION. I AM LAYING IN BED USING COMPUTER. MY HUSBAND SEEMS TO BE PATIENT WITH MY CHRONIC COMPLAINTS. I JUST WISH THAT SOMETHING COULD BE DONE. I AM AN EARNEST CHRISTIAN BELIEVER IN CHRIST AND I HAVE BEGGED THE LORD FOR HEALING OR THAT HE CALL ME HOME TO HIM. THAT SOUNDS COWARDLY BUT AT AGE 60, I HAVE MISSED A LOT OF CHURCH AND I AM NOT GOOD AT ANYTHING I NEED TO DO. I FAILED TO EVEN FILE LAST YEARS INCOME TAX.

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I SEE A NEURO SURGEOM TOMORROW. AND HAVE BEEN IN PHYSCIAL THERPY X 2 WEEKS. THE THERAPY HAD NOT HELPED. BESIDE THE EXCRUCIATING BACK, PELVIC ABDOMINAL AND LEG PAIN, I NOW HAVE SEVERE HEADACHES AGAIN. I HAVE IMITREX INJ. AND USED IT LAST PM EVEN THOUGH MY BP WAS HIGH. I FINALLY DOSED OFF, BUT STILL WOKE UP WITH HEADACHE AND THE OTHERS MENTIONED ABOVE. IF I GET SOME ANSWERS, I WILL POST.

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Dear Gert,
I am right here with you. I totally relate to what you are going through. I have all of the symptoms too. I know that is what I have as well. I suffer everyday all day. If it weren't for GOD...I don't know what I would do. JUST stay strong. He will send The Great Comforter to you. You do know that we can't take our own lives..I know you know that...that would be a sin. I just pray and read...He takes care of the rest. I focus on The Lord and He will comfort me. He will you too.

I know how hard it is to have this dread awful thing.. I fight with it sometime for I am only 44 and have two young boys. It does get hard, but somehow He just keeps me going. I truly think mine came from a nerve block...they call it an ESI (Epidural Steroid Injection)..I jumped on the table when he hit my spinal cord or the arachnoid space. I know the fear he had in his eyes as I looked up from the hole in that bed you lay on and ask.."What Happened?" I knew something was wrong right then. He made me sit up real fast and asked me, "Do you have heavy breathing....are your ears ringing?" I told him that my hands and feet were numb. I felt like I just had the soles of my shoes on and believe it or not they are still the same if not a whole lot worse than then. I have muscles that have just disappeared from my legs. I have actual rings forming and I do get up and do as much as I can before my back starts to burn like it is on fire.

Do you know what is sad. I haven't been dx with this disease. Even though I know this is it. I don't have to search any further. I have researched for so long. I had my ACD & F spinal diskectomy back in Feb. '06 and I did fine until the 3 month, but I wanted to do something good for my parents since they have taken care of me for so long. They are so good to me. I mowed, but on a riding lawnmower, so I don't see how that caused me to get to ths point. I really thought for a while it was just a failed fusion. Of course, I do have a T3-T4 compressed fracture too...plus a CM (Chiari Malformation) that I didn't even know @ until I went to my disability hearing. OHHH..I didn't want it to go that far. I have worked my entire life and love it. I am a worker...driven and it is so hard on us driven folk. I was raised that way and I think that is why I am probably in more pain than usual. If I have a good day, I will do something I shouldn't like put a picture up or pick something up just a little bit too heavy for me. I don't mean heavy stuff. I have always been able to do these things, but now I pay for every little thing I do. It just seems unfair sometimes...I know now I can just bend over to pick up a piece of paper and pay for it....WHOOO..

Hey, You take care and I will check in on you. I will keep you in my prayers and you do the same for me ...k
GOD BLESS....always..Karen

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I had major spine surgery at the Mayo Clinic after being diagnosed with 9 herniated discs. I had a multi-level fusion and was treated for stenosis, spondylosis, osteophites, and DDD was also identified. I had about 4 epidural injections in my lumbar spine and one in my cervical spine. 3 monts later I began to get worse with burning, shooting and throbbing pain in the lumbar area and could barely walk. Reclining in a chair made me feel the best. I could not walk, stand or sit erect for very long before my pain continued to build. My doctor gave me a contrast/no contract MRI and the radiologist identified the signs of the development of Arachnoiditis. The diagnosis was confirmed by my spine doc and the head neurosurgeon at the Mayo Clinic. The pain is really bad and it goes down my legs and to my feet. I have neuropathy in my feet and my cervical problems cause parathesia (tingling) in my arms and then numbness in my hands as they are right now. Look at the Spine Universe's article on Arachnoiditis. I walk with a cane now but cannot walk very far. I also have to constantly change positions to lessen the pain. I can barely sleep due to waking with burning pain, leg pain, back pain. I usually have to get out of bed and walk until my pain subsides a bit and then iot starts all over again. I am telling you these things so you can compare them to my symptoms. You really need a contrast/no contrast MRI but major spine surgery and epidural injection are the two leading causes of the development of Arachnoiditis. I wish you well and hope it is something that can be treated rather than Arach. Light exercise helps me but I have had this now for 2 years, going on 3. Best Wishes to you.

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Hi, My name is Janie Luna and I have arachnoiditis and my question is have you had spinal surgery or epidural injection and or blood patches. I had a laminectomy on 2005 and felt pretty good and thought my life would go on as usual but to my surprise I started with the pain and I do mean severe pain and was sent for a MRI and it showed that I had arachnoiditis but, my doctor didnt tell me that I had the disease he just said that I had to live with pain the rest of my life and I started on a journey of six years to finally get a dx from my neurosurgeon but its like taboo the doctors don't want to admit that you have this disease. Good luck and hopefully your ordeal is not as long as mine. There are several symptoms with this disease. I pray that you don't have this disease.

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I READ ALL YOUR COMMENTS. I HAVE HAD 2 MORE BACK SURGERIES SINCE MY LAST POST AND A SPINAL IMPLANT DEVICE. I DEVELOPED NEW SX OF FLUSHING ATTACKS, EXTREME EXHAUSTION, AND NEW AREA IN CERVICAL SPINE THAT BURNS. I AM BEING EVALUATED NOW FOR CARCINOID SYNDROME. WE APPEAR TO ALL BE IN THIS TOGETHER. HEAVEN LOOKS BETTER EVERY DAY. LORD COMFORT MY NEW FRIENDS. I KNOW HOW THEY SUFFER.

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Hello Gert,
I know what u mean Gert. I am feeling I have the same condition. I have read up on it and have all the symptoms as u say that u do. I am suffering and tired of it. Do u have a lot of muscle problems. Mine seem to tighten up to where if u was to feel of the area, it would be hard as a rock sometimes and other times be sunken in. It is strange and scary. To me, mine is like it moves. I can have a hard knot in one area one day and on another day it be somewhere else. I might be wrong on that, but it seems like most of my problems are with my muscles. I do know that I have to have problems also with my nervous system because I have jerky movements sometimes that are involuntary. My shoulder will just jerk out sometimes. I have also noticed that my left arm and hand shakes. This has been occuring more often. I am thinking of all sorts of things like Parkinson's or ALS and MS, just to name a few, but ARACHNOIDITIS is something that is very possible since I have been hit by a nerve block.
I also had an Epidural when I had my first son. It took them 4 times to try and get that huge needle in my back( when it did take it went down my left leg, strange hey?).. So, I am wondering if that could've added to my situation, but I don't think it caused it, because this Epidural was down in my lower back, but my pain is in my upper back, around should blades and neck.
MY legs seem to be very painful (especially behind my knees), but I can't leave out my shoulder, neck or back either. I tell u, if I am suffering from Arachnoiditis. then I know where mine came from. I had a series of three nerve blocks and did fine with the first two(but,they were done in my Cervical and the last one in Thoracic), but that last one was a biggy. They hit something while I was on the table when they were administering the medicine with that..what looks like a 12 inch needle that they run down through the back of your neck. I just know that is where they started when they put it down my back.
All I know, is that I am suffering and something is wrong, but I can't get any help to get well. I am faced with two possible, if not three culprits. I do know that I had surgery on my C5-C6 with what was called an ACD & F spinal discectomy and after I had pain for @ a year, decided to have the nerve blocks(ESI-Epidural Steroid Injection)to ease that pain so I could go back to work, but something went wrong somewhere and it sounds like it must be the later of the two,but one problem what is causing all of the pain that is on top of my head. There is a place that seems to be swollen and it is on the crown of my head. I am not a doc, so I guess I just have to hold on until the Doctor fixes my problem, that is if I can find a good one that will get to the bottom of th problem instead of covering or masking it with medicine. I am TIRED of medicine. I want to rid it from my life if any way possible. I know, that I might have to take something, but I hope that is just after surgery,if I need it, then taper off to NOTHING.
During the nerve block(ESI), I must say that whatever they done that day, changed my life forever it seems. I just know that after my surgery I hurt, but in my shoulder and arm...and neck, but the pain level was only a 5-8 maybe, but after that last nerve block, it has seemed to be a 20 and it has wrecked my whole life.
I am bedridden now and have extreme pain all over. My NL has even found a place on my Thoracic that looks like a round, but not perfectly round and has white edges, and he says that he "thinks" it is an artifact (that is a shadow that is seen and they can't explain it, but by saying it is basically a place you can't see through or read). I don't understand why he won't do anything @ it.
Of course,when he said that what I have, is out of his area of expertise, I should have just moved on to someone that could read it and tell me what it was. I basically had to beg him for a referral to a doctor who could tell me what it was. He did trie to refer me to another NL afterwards(I wonder), because the doctor he referred me to wouldn't see me. WHAT IS GOING ON? I thought doctors were suppose to take an OATH to treat patients and try their best to get them well.
WHAT HAS HAPPENED TO THAT RULE? I AM AFRAID TO SAY, BUT TO ME, IT IS LIKE WHAT PRAYER IS LIKE IN SCHOOL...THEY DON'T LET YOU DO IT? In a way, I feel like they couldn't give a rats behind @ me or anyone else for that matter. All they are worried about is filling their pockets with all of our money. Don't they know that eventually they won't have any patients, after all the ones that they have crapped on, is just gong to be so disabled that they won't have the strength to do anything about it. HMMMM, I hate to tell them, I am not just anyone. I am not going to let this keep, for me re-playing out the last 5 yrs. of my life is like a horror story. I am tired of suffering and don't want this the rest of my LIFE. There has got to be a way that this can be fixed or made right. There are too many of us encompassitated by all of this PAIN and AGONY in our everyday life. It is just to hard on us and not fair either to our families that are having a hard enough time taking care of us besides worrying if we are ever going to recover. I am just irate and saddened by the heartless world it is seeming to become.
I will pray 4 u Greta and may The Lord bless u and keep u:)) I wish I had my Thoracic MRI, so I could post it here. Maybe a doc could get an idea what it is. I would really like someone else to look at it, instead of my NL just holding it. WHY is he dong that? I am getting it this week though. I am just bewildered @ all of it and just don't understand, WHY?
Take care and always,GOD BLESS... <3 Karen

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I HAVE READ ALL YOUR RESPONSES AND FEEL THAT EACH RESPONSE IS A RERUN OF MY LIFE.. ARE ALL OF YOU STILL SURVIVING THIS CRITICAL TIME IN YOUR LIVES?
IN YEAR 2000, I THINK!!, I WAS TREATED WITH MEGA DOSES OF CHEMO/RADIATION FOR ENDOMETRIAL WIDE-SPREAD CANCER. THAT IS WHEN THE BACK PAIN AND CONSTIPATION STARTED. IF I HAD KNOWN THEN THAT I WOULD SUFFER THIS MUCH, I MAY HAVE DECLINED THE RADIATION/CHEMO. I HAD AN OPTION OF 3 MONTHS OR LONGER IF I DECIDED TO TAKE TREATMENTS. I AM STILL HERE. I FELT THAT I OWED IT TO MY FAMILY TO FIGHT FOR LIFE; ANYHOW; I HAD NO PAIN BEFORE CANCER DX OR DURING TX. WITHIN THAT FIRST YEAR I HAVE ESCALATED FROM BEING VERY ACTIVE AND NEVER MISSING CHURCH OR WORKING IN CHICKEN HOUSES AND WORKING COWS TO BEING 90% BED RIDDEN AND VERY SELDOM GO ANYWHERE. I AM PRESENTLY BEING EVALUATED FOR A MEDTRONIC PAIN PUMP AND AN INTERSTEM FOR CONSTIPATION AND CARCINOID TYPE 1.
WITH THE SOON RETURN OF MY LORD JESUS, I AM LOOKING FORWARD TO THE RAPTURE. UNTIL THEN, YOU ALL ARE ADDED TO MY PRAYER CHAIN. WHATEVER THEY WANT TO CALL OUR CRITICAL SITUATION.MAY THE LORD COMFORT US, GIVE US A SOUND MIND AND ENERGY. "AND, MAY HE GIVE OUR LOVED ONED WISDOM AND UNDERSTANDING OF OUR DELIMA."

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I have had arac for nearly 40 years. The only way to be safely diagnosed is to have an mri. Why not come to Facebook, and meet other arachnoiditis sufferers, ask to join our closed group at this following address: arachnoiditis@groups.facebook.com
We can help you figure out if you have arac, support you and guide you along the way.
It is a lonely road when you have arac because doctors ignore it and misdiagnose it.
louise

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