Maria de los Reyes,
a Port Authority lawyer
Adhesions—painful, fibrous growths that bind organs together—affect as many as half of all postsurgical patients
By RANIT MISHORI, M.D.
On most days, Maria de los Reyes, a Port Authority lawyer, feels the pain. "It's like someone's hand is in my guts, squeezing them to death," she says.
It's been like this for 13 years now, ever since she had a hysterectomy, which went smoothly. But then a complication set in, one of the most common but least talked about side effects of surgery for millions of American men and women — something doctors call "adhesions."
Getting an adhesion is like having a not-so-elastic band suddenly materialize inside your body cavity and connecting internal organs that are not normally connected — like loops of intestines, with your uterus at one end and a bend in the fallopian tubes at the other, or joining your intestines and the walls of the abdomen.
The growth can play havoc with your organs, causing excruciating pain and, when the small intestine is involved, bowel blockage and obstruction. Says David Wiseman, a researcher and doctor of pharmacology from Dallas, an expert on adhesions: "It's like taking a ball of string that you let the cat play with, and get it all knotted up and tangled, and then you pour glue on it and let the glue stay."
Common in men, more so in women
What's remarkable is how high the risk is for getting adhesions in the first place. They can develop after any surgery — former President Bill Clinton developed a pleural adhesion that required a separate surgery after his bypass operation. Data show they develop in at least 55% of patients who undergo surgery. The number is as high as 90% for certain types of surgeries, like hysterectomies and C-sections, which is why the majority of patients suffering from adhesions are women.
The truth is that adhesions, first recognized when surgery entered mainstream medicine in the early 1800s, are still not well understood. The best guess is that they result from a kind of overreaction by the body. Dr. Soumitra Eachempati, assistant professor of surgery at Weill Medical College in Manhattan, says: "After any type of tissue injury, your body would have an inflammatory response. The more vigorous the response, the more likely the adhesions would form."
Some people, he says, are more unlucky than others and have "an exceptionally vigorous response." They're the ones who get severe adhesions and may suffer from chronic pelvic or abdominal pain.
De los Reyes is one such patient. Like many who suffer from adhesions, her difficulties with the condition began as she recovered from a hysterectomy her doctor recommended in response to fibroids growing in her uterus. Pain (resulting from multiple episodes of bowel obstruction) was the main symptom — pain she says she can never get away from for long, even13 years later. "It is basically a day- to-day thing to see what I can do to alleviate — at least to some extent — the discomfort."
In addition to having had multiple surgeries for bowel obstruction and what doctors called "adhesiolysis" — cutting of adhesions — she has tried a lot of things to ease the pain, including prayer and meditation. She has even — and she says this seriously — tried jumping up and down on a trampoline. Sometimes these measures have helped, but only temporarily. "I'll get relief for a little while," she says, "but sooner or later I wind up having problems again."
Suffering from a lack of belief
It's not just pain that's at issue. Certain adhesions can act to tangle up a woman's fallopian tubes and ovaries, causing infertility.
Others can cause obstructions in the bowel. In these cases the only solution is to "go back in" and try to cut the adhesion or even cut out the affected part of the organ. "If you liken your intestines to a long garden hose," explains Eachempati, "then there's a part that's kinked, and we'd try to find that part and cut away the scar tissue that is compressing it."
But even that's not a sure thing. As de los Reyes has learned, adhesions can be cut, but like bad weeds, they can spring up again. She has undergone 14 surgeries to deal with her adhesions.
"It's a tremendous emotional toll," she sighs, then mentions the part of the experience that really gets to her: "You start to doubt yourself." It's a doubt that comes from having been told, too many times, by too many doctors that "there can't possibly be anything wrong with you."
Indeed, the medical system seems to be in a certain amount of denial about the problem of adhesions. Despite their frequency, few surgeons ever bring them up as a risk factor in pre-surgery discussions with patients. Afterward, once the pain begins, many patients encounter scorn and disbelief from the medical system.
Wiseman is one of the sympathetic ones. President of Dallas-based Synechion, Inc., a consulting company that handles the science and business of adhesion prevention, he also runs a resource Web site, www.adhesions.org. He's heard the lament from patients over and over again, he says. "'No one believes me…everyone says it's in my head… everyone thinks I'm making it up," he says, reciting a long list of patient complaints when they bring up their post-surgery suffering.
Sometimes, he says, all the patient needs is someone to speak to her nicely and say "'Listen, you do have adhesions, you're not making this up, it's not in your head.'"
That's the "good" news. Here's the bad news Wiseman has delivered again and again: "There's not much we can do about it, but let's plan your life."
A more comprehensive approach is what Wiseman and Dr. Jay Redan, a surgeon who is an expert on adhesion diagnosis and treatment, believe that patients need.
Weill Med College prof Dr. Soumitra Eachempati believes adhesions are a normal bodily response gone awry.
"No one's really looking at the whole picture," says Wiseman. In the fall, the two hope to launch what they say is the world's first comprehensive integrated clinic for patients with adhesions, chronic pelvic pain and related problems. The center, housed at Florida Hospital Celebration (Fla.) Health in Celebration, will feature a multidisciplinary team of surgeons, gynecologists, nutritionists and urologists, among others. This has come out of the realization that patients such as de los Reyes need more than just pain management or repeated operations.
The medical world keeps waiting for the breakthrough that will prevent
adhesions from forming in the first place. Laparoscopic surgery, which
allows surgeons to make tiny incisions, has not proved to be that advance.
In fact, research shows adhesions are just as likely to form after keyhole
surgery as conventional surgery. Some companies are trying to develop what
are called barrier agents, such as Seprafilm, a kind of plastic sheeting
put in place during surgery to keep the various loops of small intestine
from coming into contact with other organs and each other. It has been
available in Europe for some time and approved by the FDA in 2002.
adhesions required Maria de los Reyes to seek pain relief through
14 followup surgeries and other palliatives.
Wrapping up a better solution
There's also evidence that a surgeon's actual technique may matter. Studies show the risk of adhesions may be reduced when surgeons handle tissue carefully, use powder-free gloves, dissect gently, control bleeding, prevent infection, and keep tissues moist, among other measures.
Finally, there is much interest lately in the use of Cox-2 inhibitors (such as Celebrex), the anti-inflammatory drug recalled not long ago for its adverse side effects. A recent study showed a "dramatic" reduction in adhesions in mice treated with Cox-2 inhibitors. According to a press release, investigators Dr. Mark Puder and Dr. Arin Greene from Boston's Children's Hospital are preparing to set up a clinical trial of Celebrex in adult surgical patients.
Until more is learned and new products become available, de los Reyes
hopes more people become aware of the issues surrounding surgery and adhesions.
She teamed with some of her doctors and has been talking to others in her
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