[Gary_C]

#4829

Hi,

Based on history and symptoms, I believe my daughter, age 46, is suffering from a severe case of adhesive archnoiditis.

She had oil-based mylograms in 1979 and again in 1980. She had multiple back surgeries prior to 1992 and is fused from L2-S1. Until last September, she was active and athletic with easily controlled chronic back pain. Then, she did an exercise as part of a physical therapy evaluation. That exercise immediately drove her to high pain. Within two days, she could not walk – forced to use a
wheel chair. After a few days, she could walk again, but only with her knees bent and her upper body leaning forward. Her walking ability slowly deteriorated over Oct – Dec. In December, when an MRI by an orthopedic surgeon did not show a specifc cause, she was given a lumbar epidural steroid injection. That injection about killed her – pain went way up, could not walk at all, could not urinate.

She now can shuffle about 5 feet before her knees bend further and she sinks to the ground. She has to self-cath most of the time. She spends her days and nights lying down. I have to wheel her to the toilet. She is on heavy opiods (fentanyl, Percocet, oxycodone) for pain control, which is only partially successful.

I have been in e-mail communication with Dr. Charles Burton of “The Burton Report” fame. He has told me that:

“Adhesive arachnoiditis is a definitive diagnosis made on a MRI scan by a radiologist who knows what it looks like.”

Can anyone identify to me, by name, a radiologist in the United States “who knows what it looks like?”

I would like to pay such radiologist to review my daughter’s most recent MRI.

Thanks.

[Donald Corenman, MD, DC]

#4831

Arachnoiditis is the adhering together of nerve roots floating in the CSF (cerebral spinal fluid- essentially salt water). See the website for further detail. Arachnoiditis is commonly found after going through the old oil-based myelograms. Thankfully- these myelograms are not used anymore. I am sure that she had this condition prior to the new onset of symptoms. There are times that quiescent arachnoiditis can become symptomatic but the clinician must rule out everything else that can cause new symptoms prior to blaming this preexisting condition.

You do not mention where the pain is, what quality of pain (burning, stabbing, electrical, dull) and when it becomes more severe. Is she pain free with sitting or lying down and only develops pain with standing? Does she hunch forward because of pain or because she can’t physically stand up straight? What did the physical examination reveal?
The real question is what has changed since she was so active to cause her current pain.

Arachnoiditis is very easy to diagnose on a well done MRI. If you want a great radiologist to read the films- contact Marin Magnetic Imaging in Oakland, California as I think they have some of the best radiologists in the country (Dr. Jay Kaiser and Dr. Betsy Holland). Also, Dr. Frank Crnkovich and Dr. David Solsberg both in Denver are top notch.

Good luck

Dr. Corenman

PLEASE REMEMBER, THIS FORUM IS MEANT TO PROVIDE GENERAL INFORMATION ON SPINE ANATOMY, CONDITIONS AND TREATMENTS. TO GET AN ACCURATE DIAGNOSIS, YOU MUST VISIT A QUALIFIED PROFESSIONAL IN PERSON.
 
Donald Corenman, MD, DC is a highly-regarded spine surgeon, considered an expert in the area of neck and back pain. Trained as both a Medical Doctor and Doctor of Chiropractic, Dr. Corenman earned academic appointments as Clinical Assistant Professor and Assistant Professor of Orthopaedic Surgery at the University of Colorado Health Sciences Center, and his research on spine surgery and rehabilitation has resulted in the publication of multiple peer-reviewed articles and two books.

[Gary_C]

#4837

Dr. Corenman,

Thanks very much for your reply. I recognize that I did not give you a full report on my daughter, but I assure you that I have read virtually everything available on the web regarding adhesive arachnoiditis, and my daughter’s symptoms match those most often cited. She has been seen by an orthopedic surgeon. Her MRIs and symptoms have been reviewed by her prior surgeon, the head of Orthopaedic Surgery at Georgetown University. She has been examined by a private neurologist. She has been examined by a neurologist at Mayo Clinic, Jacksonville – who told her it was in her head, including her inability to walk. In July, she underwent pirifirmis release surgery and neuroplasty to several nerves. I do not doubt that the piriformis release was appropriate, but, to date, her walking ability remains essentially non-existent and her pain remains greater than before the piriformis surgery. So, I suspect that she has an as-yet undiagnosed underlying problem. A couple of weeks ago, I suggested to the neurosurgeon who had performed the piriformis surgery and neuroplasties that she might have adhesive archnoiditis. He immediately went to his office to review her latest lumbar MRI from Dec 2010. He told me that the MRI does show “some abnormal nerve clumping.” He also told me that adhesive arachnoiditis would be a “bad diagnosis” – which I took to mean that adhesive arachnoiditis is a debilitating condition with no real cure – only pain management.
We are seeing this neurosurgeon again tomorrow and I will be pressing him if adhesive arachnoiditis is his diagnosis – in addition to piriformis syndrome.

In any case, I will want a review of her MRI by a qualified radiologist. I will be contacting those who you suggested. Thanks so much.

[Donald Corenman, MD, DC]

#4838

What symptoms does your daughter have exactly? Try to be specific. Pain, numbness, weakness (caused by pain or weakness without pain), inability to stand upright and why (pain, mechanical block, malalignment, weakness). When do the symptoms come on? Can she sit without pain, lie down without pain, stand without pain, walk without pain etc….

How are the sacroiliac joints as with a four level fusion, these joints can occasionally cause pain over time?. Is the level above (L1-2) OK or worn out. What does her physical examination reveal? Does she have specific weakness or generalized weakness? Does she have long tract signs? Could this be a central syndrome (CNS)? As you can see, there are many unanswered questions.

Piriformas syndrome is exceedingly rare but I can understand at this point you would be willing to try anything.

Call the radiologists I identified for further information.

Dr. Corenman

PLEASE REMEMBER, THIS FORUM IS MEANT TO PROVIDE GENERAL INFORMATION ON SPINE ANATOMY, CONDITIONS AND TREATMENTS. TO GET AN ACCURATE DIAGNOSIS, YOU MUST VISIT A QUALIFIED PROFESSIONAL IN PERSON.
 
Donald Corenman, MD, DC is a highly-regarded spine surgeon, considered an expert in the area of neck and back pain. Trained as both a Medical Doctor and Doctor of Chiropractic, Dr. Corenman earned academic appointments as Clinical Assistant Professor and Assistant Professor of Orthopaedic Surgery at the University of Colorado Health Sciences Center, and his research on spine surgery and rehabilitation has resulted in the publication of multiple peer-reviewed articles and two books.

[Gary_C]

#4839

Dr. Corenman,

Again, thank you for your response and interest. Just via the web, you have shown a more detailed level of interest in the specifics of my daughter’s condition than have almost any of the large number of specialists whom my daughter has seen. Most have performed at best a cursory examination, read over the report from the radiologist of her most recent MRI, and wished her “goodbye and good luck.”

We have just spent the past 6 weeks away from our home in Florida while my daughter was examined by a neurosurgeon who asserts to be “the world’s leading expert in treatment of nerve pain” – and his credentials appear to be outstanding. Based upon his clinical exam and his open-MRI diagnostic guided injections, he recommended piriformis release surgery and neuroplasty to several nerves, which he performed a few days later. To date, my daughter’s condition is worse than before surgery, but he has told us that nerves can take months to heal. I will be discussing other underlying diagnoses with him tomorrow, including adhesive arachnoiditis.

If we do not shortly arrive at a definitive diagnosis, I would be very interested in continuing an investigation of my daughter’s condition with you – with all the details. However, I don’t think it appropriate to take up your forum with such details. If okay with you, I would like to contact you by mail at your location in Vail. If we have still not made reasonable progress to a definitive diagnosis, we would be interested in making an appointment – more likely several appointments with you in Vail. As we have done with this California trip, if appropriate, we would travel to Vail to see you – if you were willing to really get to the bottom of my daughter’s difficulties.

She has no life left, so I am willing to go to great lengths.

[Donald Corenman, MD, DC]

#4840

I can understand how you feel. It is difficult to watch your loved one incapacitated. As you can probably tell from this forum, my speciality is diagnosis. I cannot promise any cure but more likely than not an appropriate diagnosis can be formulated. Even if this turns out to be arachnoiditis, there are treatments that can manage but not cure this disorder. If you so choose, please call the office at 970 476-1100 and ask for Diana or Sarah.

Dr. Corenman

PLEASE REMEMBER, THIS FORUM IS MEANT TO PROVIDE GENERAL INFORMATION ON SPINE ANATOMY, CONDITIONS AND TREATMENTS. TO GET AN ACCURATE DIAGNOSIS, YOU MUST VISIT A QUALIFIED PROFESSIONAL IN PERSON.
 
Donald Corenman, MD, DC is a highly-regarded spine surgeon, considered an expert in the area of neck and back pain. Trained as both a Medical Doctor and Doctor of Chiropractic, Dr. Corenman earned academic appointments as Clinical Assistant Professor and Assistant Professor of Orthopaedic Surgery at the University of Colorado Health Sciences Center, and his research on spine surgery and rehabilitation has resulted in the publication of multiple peer-reviewed articles and two books.

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