Arachnoiditis: Trying to find a specialist

Has your doctor determined the cause of the pain? Is this a case of "bone on bone" or "muscle" related? I had pain both in my knees, hips, and lower back. All three areas of pain turned out to be a result over tight muscles which placed more than normal pressure on these joints and therefore cause the nerve pain. A Physical Therapist resolved all of these issues with simple stretching exercises which loosened the muscular force on these joints. Note that the hip and knee pain was more at the annoying level of pain and something I could live with. However, the lower back pain was so bad I couldn't move at times. It was excruciating. Meds did nothing for this condition.

If you have bone on bone conditions that is another story. I've heard of artificial material being implanted to replace the worn out meniscus. However, I don't hear much about this so I'm not sure of the success rate. A relative of mine just went through the libation of the nerves in her knees and it appears to be working so far. But time will tell. A point to consider though is that a neurologist once told me that libation of a nerve can sometimes end up with more pain so research this before you engage in such a procedure. Good luck.

Hi, @kathrynd1 - welcome to Mayo Clinic Connect. Sounds like you have a story to share with your journey with arachnoiditis with debilatating pain.

Please click View & Reply in your email notification so you can see the conversation in its entirety on the Connect site.

This would be a great place to explain some of your story, and I'm sure others in this conversation would benefit from hearing it. If it's very long, perhaps in brief to begin?

Hello to everyone! It sounds like we all have been on a journey to get here, I only wish it had been a fun journey. For those of us who have been diagnosed with arachnoiditis, it has been quite an experience. I knew there was something wrong with me but some doctors said there wasn't anything wrong with me and I walked right out of their office. I was not going to give up.

My husband and I relocated to Charlotte, NC from Boston in 2004 and the pain followed me down here! I have had a dozen back surgeries, way too many epidural cortisone shots, a spinal cord stimulator and a pain pump implanted and nothing helped, I kept on getting worse and worse. The last year has been crazy, I was hospitilized in October and the team of doctors on my case told me I had arachnoiditis. Just the sound of this word kind of sounds evil.

I spend most days on the couch with ice packs under my legs. When I do go out it seems that I pay for it later. Does anyone know of any good doctors in the Charlotte area?

Well that is enough for now, would love to hear from people in the same boat!
kathrynd1

@bfsecurityguy I would recommend you search your area for integrative pain specialists. Mine prescribes oxytocin troches & ketamine troches for me. They work together for all kinds of pain. I have to say, they do work better than any of the other medications I've had over the years and they are also affordable. Also, a good physical therapist will be able to provide a variety of treatments. Have you ever had laser therapy? Have you seen a neurologist for this?

Hi, Nice to meet you. There are doctors out there. May I suggest checking out these support groups on facebook. Arachnoiditis, arachnoiditis everyday and arachnoiditis together we fight. They have been quite helpful to me. Sorry we had to meet by having this in common

@ @christinasuit My paperwork ALL said arachnoiditis and the disability judge said he didn't believe that is what my problem was. Dr ForestTennant will help read MRI so you can show the findings to your GP which should helpifyou do have arach

I have been suffering from this problem for about 8 years now. My disability lawyer was fantastic. The judge we had was so understanding. But, to treat this condition is to say the least, hairpulling mad. But, I found an awesome pain management doctor that is god sent. I went through several before finding him. I wish you luck in finding relief and if you need to vent...please feel free to contact me via this website.

In 2016 one spine surgeon said I "probably" had arachnoiditis, but he sort of slid the comment in at the end of the office visit. I didn't know what questions to ask, but based on my previous appointments with him, he wouldn't have said very much, except to clarify that there was nothing he could do for me. Since then I have been told (after I asked if they could see it on the imaging) by three other neurosurgeons that I have arachnoiditis, and that I have cauda equina syndrome by one neurosurgeon, but they didn't mention this in the records, nor did the radiologist put it on the report. One radiologist said the diagnosis codes that the doctor put on the order would determine what information he would include in the impression. I took this to mean that unless the doctor gave the radiologist the O.K. nothing about certain things, such as iatrogenic conditions, would be on the report. The nurse practitioner ordered another sacral MRI, at my last pain management appointment, after we specifically discussed the fact that the previous imaging had severe artifacts from surgical hardware and a pain pump, and that no one had ever ordered imaging of the sacral nerve roots before. I explained that a neurosurgeon had told me, the previous week, that he could see arachnoiditis on the lumbar MRI that I took to the appointment. The nurse practitioner even asked the name of the doctor and typed it on his computer. I proceeded to tell him what the radiologist said and asked him to put arachnoiditis and cauda equina syndrome on the order. He indicated that he would do this, however, I was contacted by the person that was scheduling the MRI, who said he had put cauda equina syndrome, but not arachnoiditis, on the order. If I have the test and the radiologist doesn't see cauda equina syndrome, where will this leave me? I seriously doubt that he will say I have arachnoiditis, since none of the other ones have. Every radiologist in my area knows that surgery caused my problems. I could hear the nurses talking about this when I was lying in the MRI machine during the last test. I was approved for disability for a cervical spine problem, but I would like to find a pain management doctor that knows more about arachnoiditis. Did your doctor order MRI's for you, and if so did he put arachnoiditis on the order?

@jelizabeth

I'm going to have to disagree with the radiologist that told you the diagnostic codes the Dr. put on the order would determine what he included in the report. I understand that they are supposed to do as ordered but there is no reason they can't include all incidental findings. You are paying for these very expensive tests and you should have a say in how they are done. I found Nicolas Argy's point of view on the matter. https://www.nicolasargy.com/blog-2/index.php/2016/07/02/not-reporting-incidental-findings-in-radiology-reports
Not sure if I can post stuff on here so if it's not allowed just Google Nicolas Argy dot com. Check out his blog titled "Not Reporting Incidental Findings In Radiology Reports". His credentials are very impressive. He knows his stuff! You could argue that the radiologist refusing to include the incidental findings is a violation of the Standard of Care. You have the right to know about everything that shows up. Here is a clip from this discussion...

The current standard of care is to report all findings present, including those thought to be incidental and benign ( all corners of the film). By not reporting incidental findings, radiologists are breaching the standard of care. Not reporting them suggests to most lay people that the radiologist either missed the findings or was too busy to report them. While rare, benign appearing findings do sometimes turn out to be significant and even benign lesions have the potential to malignantly degenerate. Aren't these rare events, with potential catastrophic damages, the exact genesis of lawsuits.

Your input is very much appreciated! Everything started with the surgeon in my small town who did the first back surgery that ruined my spine. He said he would only order MR imaging at the hospital where the surgery had been done, which was because he knew he could tell the radiologist what to put, and not put, on the report. When I told the surgeon that I did not want it done there he informed me and my husband that we no longer had a doctor/patient relationship and dismissed me less than two months after the surgery had been done. This was the perfect way for him to get rid of me. No one wanted to become involved with my care, however. Primary care doctors were rude. Neurosurgeons didn't want to see me, and if they did they wouldn't tell me the truth. The look on their faces told the story, though, after they saw my imaging discs. It was so hard to keep researching what doctor to see next, and I didn't know anyone in the medical field to advise me. After travelling from TN to doctors in five other states I finally saw the websites about blacklisted patients and this 100% describes my experience. Going to doctor after doctor and dealing with the false things that were put in my records to cover up what the surgeon had done, while having debilitating pain, destroyed my self confidence.

Thank you for the information and the website. I need all the help I can get. I am going to ask some of the radiologists, who have read my reports, to give me a more detailed imaging report. In the future, when I have a new test I will ask them, beforehand, if they will provide me with all of the findings, but let me tell you this. The nurse practitioner I saw the last time in pain mgmt. said he would order a pelvic MRI. I asked him to put DX codes for cauda equina syndrome and arachnoiditis on the order and explained that the last neurosurgeon I saw, the week before, had said he could see arachnoiditis on the disc I took. (I had already given them records from a neurosurgeon stating that I have C.E.S.) He wanted to know the name of the neurosurgeon and typed it in on his computer. It was the first time I saw this man at a pain mgmt. appointment. I had previously seen a nicer woman. The man indicated that he would put the DX codes on the order, but when the scheduling clerk called she said he had put C.E.S., and not arachnoiditis. I also noticed on the prescription for my medication that he had listed four DX codes. They included C.E.S. and "meningitis", but not arachnoiditis. Meningitis is the result of infection around the spinal cord, whereas spinal adhesive arachnoiditis is typically caused by an iatrogenic injury, such as a spine surgery. There is nothing in my records about an infection, but none of the doctors will say I have arachnoiditis because they know it is caused from the first surgery I had. The surgery was done seven years ago!!