Arachnoiditis: Trying to find a specialist

Hello to everyone. I am new to this forum and found it just by chance online trying to do some research on this awful disorder. I was diagnosed with Arachnoiditis in early 2015 and was simply told there is no cure just pain management. Unfortunately I am at my wits end with the pain and discomfort not to mention how it has turned my life as well as my family’s life upside down. Not only was I diagnosed with this disorder I was also diagnosed with Myasthenia Gravis which is just as rare. I am desperate to find a doctor that not only can treat or help me but that is actually familiar with both of these disorders. I was a registered paralegal and have been unable to work in over 3 years due to the pain. Most dsys I cannot even get out of bed. I am tired of dealing with all the issues of taking pain meds with no relief in site. I was an extremely active person, abid boater and scuba diver. Nowadays I can barely even walk. This is a condition that you have to have to know how intense the pain is. Please if anyone can point me in the right direction I will be forever grateful!

Hi @jimaem I know exactly what you mean!! I can’t understand with all the medical advances that we have in our wonderful country how there cannot be some sort of treatment other than pain meds to help us that live with this debilitating disorder.

Are you a part of any of the support groups thru Facebook?
I know and understand what you are dealing with as I too have been dealing with this for just a little over a year. The feeling of despair tends to rule my day more than anything other than the pain. I understand and hope you look into the groups, I'm not much help right now because I don't know how I keep going to bed and waking up, but there's a ton of support. Arachnoiditis and Arachnoiditis Everyday are in the search on Facebook. I have been told there is no fixing, just learning to manage.

@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.

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?

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.

@ @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

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

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.

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