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Arachnoiditis: Trying to find a specialist
I am from North Carolina. And out of the 15 doctors I have seen since 2015 have said that arachnoiditis is rare and you do not have it. But no one is listening to my symptoms. Received a shot in my L5. But the doctor missed and hit the nerves while injecting Since that date I went from being able to walk to not at all. I am now in a wheel chair. Pain is in both legs to toes. None of the pain meds that my pain management has prescribed touches the pain. I have jerks in both of my legs. Weakness. Tingling and numbness in feet. My right eye has lost vision. I sweat on the top of my head for no reason. And out of the 3 MRIs I have had none have been done on the lumbar wth contrast. The pain gets worse week by week and no luck on finding a doctor. We are willing to travel if necessary. Please help.
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Thanks for sharing!
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1 Reaction@peggyella I also have Arachnoiditis with debilatating pain,I feel for everyone withth this condition. I just now joined this group and don't know where to go to post my own very long story. I would like to find a support group. From what I have read elsewhere doctors don't know, understand this condition, or know when a patient has this. It seems to me more awareness needs to be brought out to doctors and the goverment.
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1 ReactionThe Director of the FDA comments
I have severe chronic pain in my knees and lower back. My Dr has weened me off all my opiod pain meds and started mega doses of gabapentin. Which has done nothing for my pain. Does anybody live in the Seattle area with a good pain Dr?
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.
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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
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1 Reaction@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?