Adhesion-Related Pain Often Undiagnosed

“People describe the pain in different ways .stabbing, grabbing, throbbing pain that really becomes debilitating.” That according to Anthea Nesbitt,a retired nurse and co-founder of a web-based support group for people suffering from adhesion-related problems.

Adhesions are defined as fibrous bands of scar tissue that bind together organs that are normally separate. Dr. Richard Schlanger of Ohio State University Hospital East says, type one adhesions are part of the normal healing process, and everyone gets them. He describes them as filmy, like spider webs that easily break apart.

But about two percent of people develop type 2 adhesions which are much tougher. They often involve the bowel and can lead to an obstruction. These adhesions might be the result of an abdominal surgery done years earlier. Dr. Schlanger says, Adhesion Related Disorder is not recognized as a disease, but he adds, there is much about adhesions that are not known including why some people have problems with adhesions and others do not.

Nesbitt has had first hand experience with the pain adhesions can cause. “I’m a pretty functional adhesion sufferer. I deal with people, though, who are applying for disability because they are unable to work or function in a normal way,” Nesbitt says.

Adhesions are difficult to diagnose. Dr. Schlanger says CT scans and other tests are generally not helpful. When the tests are exhausted, he typically tries medicine to clear the bowel and an exploratory laporatomy. And that might also fail. Likely the only option that remains is full surgery.

“I don’t think, without viewing the inside, the abdominal cavity, either with a scope or what we call the hand scan – the ultimate operation – can you really say, ‘Well you don’t have anything. We’re going to ignore you,’” says Schlanger.

Dr. Schlanger’s view is not shared by all doctors. Nesbitt says, patients who have adhesion-related pain generally go from doctor to doctor seeking help and finding none.

“A lot of doctors treat us as either drug seekers – because a lot of patients go in asking for pain medicine – or they’re referred to a psychiatrist,” Nesbitt says.

After surgery on about 20 to 25 women, Dr. Schlanger says he’s found medical problems related their pain in about 10. If there are no adhesions, he moves on to other possible causes for the pain – nerve entrapment, disc disease, fiber myalgia.

Sometimes, there is no resolution no reason for the pain. He says, that is where support groups should come in because many of the patients whose pain has not been resolved have retreated from the world. Nesbitt knows their stories.

“Most of our patients are very frustrated and feel very isolated. A lot of marriages have broken up. They’ve lost family. They’ve lost co-workers. They’ve lost any kind of support system,” says Nesbitt.

Dr. Schlanger says most of the patients he sees with what might be adhesion-related pain are women. That’s understandable, he says, given their gynecological make-up. He anticipates seeing more men in the future, though, as increasing numbers of men reach the age where they might have prostate problems.

He recommends that anyone facing abdominal surgery get a thorough understanding from their doctor of what to expect following the surgery – pain and all. Then, if something unexpected happens, let the doctor know immediately. Get a second opinion, if necessary.

“I think if we catch this syndrome, so to speak, early enough, we can break the pain cycle. That will prevent them from going into this adhesive disorder grouping,” says Schlanger.

Dr. Schlanger also has a recommendation for other doctors who cannot find a reason for a patient’s pain. “Listen listen to your patient. They are telling you something, and you need to be wise enough to know there are these other varieties, these tangential groupings, that just don’t fit the norm. And they’re not crazy,” says Schlanger.

Dr. Richard Schlanger is director of surgical services at OSU-East. Anthea Nesbitt is co-founder of the adhesion support group “bombo-beach-dot-com.

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