Helen Dynda’s ressources

1. Adhesion related disorder (ARD) 

The chronic pain of adhesions impacts the lives of its innocent victims in many ways!! Helen is providing information to help you learn as much as you can about adhesions and ARD – with the hope that you will have learned how to make wise choices regarding your care. Knowledge is power in a doctor/patient relationship. 

2. Adhesions and Adhesion prevention 

What are adhesions? What causes adhesions? What is the treatment for adhesions? How can adhesions be prevented? Helen is providing web sites of information that will help to answer these questions. 

3. Adhesions and Pain Management

4. Helen D's ARD Library 

5. Education, Support and Experience of others offer Hope

We all thank Helen very much as she is a special person and THE source of information for every ARD-sufferer and for everyone, who is dedicated to this topic. 

Helen, THANK YOU! 

To know more about Helen, here is her story: 

Painful bonds 
By Jane Langman 
October 18, 2002 

Maybe it's happened to you. You had a surgery and afterward, you never felt like yourself again. There was pain within the site of the surgery, but all your tests came back showing nothing was wrong. 

The doctor assures you the pain will go away, but when he/she stops listening, you get a second opinion. Again, the tests come back fine. So you stop trying and decide to live with the pain. What else can you do? 

Adhesions are a common side effect of surgery, yet little is known about them among the public, according to Helen Dynda of Hoffman, who has suffered from adhesion-related pain for 32 years. 

Adhesions are internal scars that form during the body's natural healing process, in as little as three hours or as many as seven days after surgery. 

As this fibrous band of scar tissue forms, it connects organs in the body that are normally separate. When an organ, such as the bowel, moves naturally to do its job, the adhesions may pull on nerves or trap them, causing pain. 

The problem can occur on virtually any tissue surface, including the heart. The more common organs are the ovaries, pelvic sidewalls, fallopian tubes and bowel, according to the Confluent Surgical Learning Center (CSLC), which develops products to help prevent adhesions. 

For Dynda, the adhesions connected her abdominal wall to her omentum, which is a protective layer between the abdominal wall and the intestines. The surfaces were essentially glued together, which caused her agonizing, stabbing, aching pain radiating out from her lower pelvis to her hips. 

Dynda's troubles began in 1969 when she was hospitalized for kidney stones at age 39. Months later, she still had lingering pain, and the doctor decided to do a laparotomy, exploratory surgery in her abdomen to determine the cause of the pain. 

Looking back, Dynda sees the laparotomy as the start of her troubles, since the adhesions (when they were discovered in 1997) ran the entire length of her seven-inch laparotomy scar and were four inches in diameter. 

Unknown problem 

Despite adhesions being a side effect of surgery, patients are often not aware of the risk, according to Dr. David Wiseman of Texas, a researcher of adhesions and founder  of the International Adhesions Society (IAS). 

There is little agreement in the medical profession about whether adhesions cause pain, and doctors aren't always willing to treat adhesions because it is too difficult or is considered futile, Wiseman noted in his paper, "A Patient's Guide to Adhesions and Related Pain or…You are Not Alone." 

Dynda didn't discover the cause of her pain until about five years ago at age 66. 

During more than two decades of suffering, while seeing physicians in Alexandria, the Twin Cities and the Mayo Clinic in Rochester, Dynda never heard the word "adhesion" until 1996 when she visited an endometriosis specialist. 

She saw the specialist after reading "endometriosis" in her medical records and deciding to investigate further. 

The doctor thought her symptoms sounded more like adhesions than endometriosis, Dynda said, and hearing that one word changed her entire perspective. 

"It was a relief to know there was something wrong — that it wasn't all in my head," she said. 

Formation/prevention 

Adhesions can develop any time there is internal bleeding (from an injury or surgery), from the pinching of blood vessels or from inflammation. 

Commonly, adhesions result from the most routine activities of surgery including cutting, coagulation and suturing, according to the CSLC. 

Foreign materials such as sutures, lint from sponges or powder from surgical gloves can cause an inflammatory response that can result in adhesions, the CSLC notes. 

Finally, adhesions can form from anything that causes an inflammatory response, such as endometriosis, radiation therapy, pelvic inflammatory disease and infection. 

There are prevention measures surgeons can take to reduce the risk of adhesions, according to the IAS Web site, www.adhesions.org. These include minimizing the handling of tissue, using delicate instruments, using magnification and constantly wetting all tissues. 

Surgeons can also use adhesion barriers, which are products that cover the tissues exposed during surgery, making them less likely to adhere to another surface. 

Three adhesion barriers are approved by the FDA, but are often not used for various reasons, including the difficulty a surgeon may have applying them. 

A promising product, according to the IAS, is SprayGel, which is currently being used in Australia, Europe and the United Kingdom, but is not yet approved in the United States. 

Treatment 

Individuals who already suffer from adhesions may or may not find help from having an adhesiolysis (separating the organs) because adhesions have a tendency to form again. 

For Dynda, surgery brought only temporary relief. Within 10 days, the pain returned. She tried to make an appointment with the endometriosis specialist, only to discover he dropped her as a patient due to Medicare's partial payment of the surgery bill. 

Life goes on 

Dynda may never be pain free, she said, despite having undergone two more adhesiolysis procedures, both in Germany. Her pain is tolerable, and when it gets bad, she uses her "lifelong technique" of distraction. 

She also makes a point to get out more while continuing to educate herself and others. 

It was after her first adhesiolysis that Dynda began researching adhesions on her own, including searching the Internet. After reading Wiseman's paper on adhesions, she responded to his query about forming a support group. 

He wrote back and Dynda soon became instrumental in helping him develop the IAS and the organization's Web site. She researched information for the site and began handling Wiseman's mailing list. 

She also "fell into" the role of patient advocate, educating others about adhesions mostly via e-mail. She has provided information to more than 1,000 people worldwide. 

Dynda encourages everyone who is in pain to educate themselves, whether they suffer from adhesions or other illnesses. 

"People have a responsibility to educate themselves and talk to their physician," she said, adding one of her favorite quotations as good advice: 

"Knowledge gives you strength. Knowledge gives you courage. Without courage there can be no progress. Without progress there is no solution."