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Arachnoiditis Sufferers User Group
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About This Group:

Arachnoiditis is a rare chronic neuropathic disease that has no cure. If you are looking for others who have this disease, you have found the right place. Take a moment to tell your story. Together we can help each other in our journey with Arachnoiditis.

Founded by mummy3too on July 30, 2010
26 members
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Welcome!<img src='/RoR/images/blank.png' class='icon_img_ww push_pin_icon'>

Welcome to the Arachnoiditis Sufferers group. What is your story? How were you diagnosed? Have you even found one doctor who understands this condition? Please share!
7 Comments
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1322157_tn?1279660281
Hi. I was diagnosed with Arachnoiditis (Adhesive Arachnoiditis) when a radiologist caught it on my last MRI. I have nerve clumping at 2 levels. My story is...

I have had surgery twice on my L5/S1 for herniations. The second surgery left me in more pain than before. 6 months after that surgery, my neurosurgeon sent me to pain management. He was leaving his practice and did not know what else to do for me. I endured 11 injections in the next 8 months then tried PT. When the PT cause the pain to get worse, he sent me for a MRI. I have multiple level herniations in the lumbar and cervical spine. Excessive scarring in the Lumbar area, Epidural Fibrosis, S1 nerve encased in scar tissue, Arachnoiditis at 2 levels, DDD, Stenosis,....I am sure I am forgetting something. I am told I need fusion at the L5/S1 and multi level in the cervical area. I have chosen not to have surgery. I am concerned that further surgery will exasperate the Arachnoiditis and make the progression quicker. I have found it difficult to find a doctor who knows much about this condition and even had one Orthopedic Spine doctor tell me everyone has Arachnoiditis after surgery. I would love to hear from you. There are very few places on the web and in the world where sufferers like us can get together and share our feelings, thoughts, suggestions, and stories. Again, welcome and "let's stick together!"  (Yes, I just thought of that..lol)
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The one bad thing about this is that people probably have some symptoms and not even realize what it is called, so they don't know to discuss it with their doctor. However I have found someone who knows exactly what it is and how much it hurts on a daily basis. My pain specialist.
As for my story, short, not sweet, but complicated. In Oct of last year I found out for the first time what exactly was wrong with my back (I never went to the doc for it). Everyone (well almost everyone) says their back hurts, so I never had it looked at till Oct. The results from the x-ray alone floored me. Then the MRI came back, it was even worse. Bulging disc L4-L5 Herniated disc L5-S1, degenerative disc disease, severe arthritis, just to name a couple. I had no choice but to have my back fused from L4-S1. The surgery itself was a success (so the surgeon says), since then the pain has never really changed. Back hurts, legs hurt, legs tingle, go to sleep when up, muscle spasms, numb toes more swelling than I have ever had, it can keep going. So, I pushed the issue to my Neurosurgeon to check for scar tissue. While I waited for the test and the results, he sent me to PT (mistake for me). Well my theory was correct, it was scar tissue, along with something else. The radiologist confirmed that my scar tissue is due to Arachnoiditis, additional pain could come from another Bulging disc right in the middle of my fusion L5-S1. After doing countless research on this, I did not like what I found, it really is depressing (at least to me), but still no answer on how I could possibly get another bulging disc in the fusion. I have found 1, out of many, doctor who understands this Disease and will do her best to help. My pain management doc. That's about all we can do with this type of scar tissue.
So with this forum hopefully it can help with finding more people like us, and talking about it will help with some of the frustration and depression that goes along with it.
Thanks mummy3too, this was a good idea to put this together. I really hope it comes together to find more and more people Like Us.
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1322157_tn?1279660281
You are very lucky to even have a pain doctor who understands this! Although my PM is very sympathetic, he does not know much about the disease. It seems like the symptoms vary everyday. Just recently I have also begun to experience a buzzing feeling. It's almost like electricity is running through my body... I actually thought I was standing too close to an outlet and the somehow the electricity was penetrating my body - until I realized that it stayed with me whereever I went. I also hope others who have this disease or condition (not sure what to call it) will find this webpage and join us. I believe the best way to educate ourselves on Adhesive Arachnoiditis is to meet and learn from others who have it. I would also like to hear from others on how they are treating their pain.  What is your PM doing to help you? Thank you so much for posting!!
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1602878_tn?1304339616
I have also been diagnosed with arachnoiditis. It was only recently that the term was used by my Doctors. They used to say that I have a lot of scar tissue inside and outside of the spinal cord. Two surgeries inside the cord, several spinal fluid leaks - one from epidural injection, one when spinal cord stim was implanted, and one now from my most recent myelogram. I was born with a tethered spinal cord, and consider myself fortunate to have the health I have had. Most severe ones have been since 2003. It was great to find others who understand about the electrical pains, pounding low back pain, feeling of sitting on a broken tail bone, the bad numbness in the feet and legs, as well as sunburn like pain or the feeling that you stepped in something wet - I've checked my socks because of the wet feeling. I will say that I do get pain relief from my spinal cord stimulator (medtronics), gabapentin, celebrex, lortab, ice and heat. It helps if I keep as active as possible, focus on how I can help others, and swimming and water exercises are great. My faith in God, my family and my great friends have gotten me through so much - oh, and a sense of humor! Laugh every day if you can!
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Diagnosed with arachnoiditis in 2010 after 5 steroid injections, myleogram, laminectomy, spinal fusion @ L4 and L5, and another laminectomy. And THEN they tell me I have AA, and it can be caused by procedures on the spine! Now pain clinic wants me to try spine stimulator, which involves 2 spinal procedures! I don't get it!!! Anyone else tried this?
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Avatar_m_tn
I had back surgery back in 1987 at age 16 due to a spinal canal tumor at L4-L5, which gave me relief for a while but then started with pains years later.  Over the course of the 25 years since my surgery I have had numerous MRI's with and without contrast as well as a mylegram.  I was never really told that I had Arachnoiditis but it was diagnosed.  I have since ran all over town and numerous locations to gather all old reports.  Now I am having numbness in fingers, toes, legs, arms, tongue and lips.  This happens daily now mostly at night.  I just recently had a MRI last week tht shows the severe Arachnoiditis and tons of scar tissue.  I have just spent three days in the hospital due to non working bladder and bowels.  Talk about painful!  Not to mention the cramps in the low back and low front area.  I was told by my new Neurologist to seek Pain Management.  I am not too sure he is very knowledgable due to when I called him on Tuesday telling him how much pain I was in from the non working  bowels and bladder....he said it could be due to my thyroid issues. Ended up in the hospital for three days in pain.  HMMMMM......  OK, time to find a Dr who knows more about Arachnoiditis.  I hope there will be help for all of us suffering from this terrible disease.  

I also have read that Arachnoiditis can be brought on from mylegrams, epidurals and numerous other things....is this true?  I will start my journey tomorrow in finding out more info and finding me a new Dr. who knows more about the disease.  :)  

Can anyone list any other symptoms that come along with this diesase......  I have the following but not sure what it related to this.  Headaches, neck aches,back aches daily,constipation, trouble urinating or frequency,  numbness in feet, legs, hands, arms, tongue and lips.  Mainly at night is when the numbness is there, but has now started to do it during the day....a very scary feeling.  I am 41 and a mother of 2!  What does my future hold for me?

What have some of you been doing for symptoms or pain??
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1840891_tn?1383280315
I just joined this particular forum, and I'm just filling in some history. In 1982 I had a back injury that resulted in damage from L4 to S1, two bulging disks and damaged facet joints. The first orthopedic doc ordered a myelogram, which didn't seem to cause any problems at the time. In 1983 I tried chymopapain injections in the two bulging disks and was made much worse. In 1984 I had the two disks removed and a fusion with 2 Harrington rods. The first time they made me sit up one of the rods came loose and crushed some nerve roots, causing excruciating pain and lose of bowel and bladder function. At that point I was told that my uniquely thick bone structure had posed great difficulty in attaching the rods, as none of the available sizes were a good fit. The next morning I was wheeled back into the OR to try to fix it, and I was left with a single Harrington rod attached in an unusual way and with a lot of additional wire added to help secure it. I had to wear a body cast for six months. The bowel and bladder function gradually improved to a nearly normal level, but I was left with pretty bad nerve pain in both legs. After a year of follow-up with my orthopedic surgeon I was transferred to an internist at the spine center for ongoing care. In 1986 I started having weakness in my right leg and having a lot of falls as a result. After another MRI  it was decided to do one more surgery to remove the remaining rod. They discovered extensive spinal stenosis due to an overly-exuberant growth of bone at the fusion site, and they also noted "very extensive" arachnoiditis seen by visual inspection after an accidental tear in the dura when removing the wires that had been wrapped to initially secure the rod. At this point I asked for copies of ALL of my records, and learned that there had also been a tear in the dura during that second surgery to reposition the rod. There was no mention of any visual inspection under the dura at that point, and no one had ever mentioned the tear to me.  It never has been clear exactly what caused my arachnoiditis – it could have been that myelogram ordered by the first doctor, the chymopapain injections if they leaked, an epidural injection (I've had 4 or 5 spread out over many years, but one stands out in my memory as having been vastly more painful than any of the others), or the dural tears during surgery. 

I've continued in the care of the same internist since 1985 to the present, and he is still part of a multi-disciplinary spine care center. We know and trust each other. I've tried a massive number of different approaches to pain control but it seems that nothing works very well and I can come closer to living a satisfying life by just using small doses of narcotics and modifying my life a lot. In 1986 I also discovered that my 1984 surgery had infected me (via transfusion) with Hepatitis C. I have had to restrict my meds a lot due to my hep C, which has led to cirrhosis and causes my liver to be  extremely sensitive. I'm currently on my third attempt at eliminating the virus before it causes liver failure. I manage my arachnoiditis pain  mostly with OpanaER, occasional Opana IR, and avoiding activities that stretch the spinal cord or nerve roots of put other types of stress on my spine.
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