The Aword

Hi, I am new to this Forum. I was wondering if anyone could explain to me the difference between Arachnoiditis and Adhesive Arachnoiditis. I am confused now that I have read reports of both Dr. Burton and doc Sarah. Is clumping of nerve roots the early stage of AA? Or is it just simple A that does not normally have any symptoms?

The mylogram with CT I had done over a year ago: the radiologist reported that the findings was consistent with an Arachnoiditis involving the lower caudal equinal roots, noting that there was clumping of several nerve roots within the thecal sac at about the L4 vertebral level. The neurosurgeon who had ordered this test told me that the findings were much better than he had anticipated, making me think that arachnoiditis was pretty much nothing. That was over a year ago. I just went back to him last week because my pain in the legs had been just getting worse. He basically implied that I didn't have arachnoiditis but that what I was experiencing was all musculoskeltal (spell?), meaning fibromyalgia. He said the radiologist's report was just one man's interpretation. Although it is getting worse, what I am complaining about is nothing new but the same things I have been experiencing all along since I first went to see him for cervical spondylosis in 2003. Well, my current rheumatologist told me recently that I didn't quite fit the typical picture of fibromyalgia but that I had real mechanical problems. She doesn't think I needed to come back to see her any more. I just feel deserted, misunderstood, not respected, etc. I am confused.

I had a fusion of L5-S1 due to spondylolisthesis in 1991. I received epidural anesthesia during my labor for all three pregnancies, of which the first one ended up with C-section with more dose of the anesthesia and morphine through the same catheter for post-operative pain. I had a diskectomy and fusion at C5-C6 sue to spondylosis. I have central canal stenosis at C4-C5, according to the MRI done about 2 years ago. I have many of the symptoms that others with A or AA have -- at less severe level. I have some other conditions/symptoms as well, such as rotator cuff tendonitis/tendinosis, restless legs syndrome, TMJ, headache, ringing and stuffiness in my ears.

I feel like doctors are missing on something. Any idea or thought?

Thanks in advance for listening.

Mitsuyo

Dear Mitsuyo,

the basic difference between arachnoiditis and adhesive arachnoiditis (AA) is one that Charles Burton feels reflects the difference between clinically insignficant arachnoiditis, mild inflammation known as radiculitis (nerve roots affected) without sticking together. Adhesive arachnoiditis is simply the more severe, clinical form i.e. it causes symptoms. From what you've written, you have the latter by definition. Simple arachnoiditis can be present after trauma, infection etc. but goes undetected because it doesn''t cause problems.

Many people with AA get symptoms like yours and have similar stories of operation, epidurals etc. as well as various diagnoses from different doctors. Fibromyalgia (FMS) is a common one, and I personally think that you could have FMS secondary to the AA. You may well have other mechanical symptoms related to the original spinal problems and other ongoing mechanical spine problems. So there is (as is typical) a mixed bag of symptoms. You might find the area on this site in the long article on AA, titled How Arachnoiditis Causes Pain useful.

Regards,

DocSarah

Dear DocSarah,

Thank you so much for taking time to respond to my question. It's so great to know that there are people out there who understand what I am going through as many of my doctors don't take me seriously.

Mitsuyo

No problem Mitsuyo, glad to help!

Take care,

DocSarah