Hope For Those Who Suffer From Adhesion Related Disorder.

Informed Consent And The High Risk For Post Surgical Adhesions

Please click the link below for the press release on informed consent:

Informed Consent

Adhesions Video By Nucleus

Though the video below does not cover the importance of a barrier (adhesiolysis without an adequate barrier is useless), condones the use of CO2 (which we have learned dries the delicate tissues and is a factor in adhesion formation), it is a good visual aid that quickly explains why adhesions can be completely debilitating. To view actual surgical adhesions, please refer to the online atlas provided at the link below, courtesy of Dr. Daniel Kruschinski. Dr. Kruschinski is the leader in successful adhesiolysis procedures that are performed using a gasless, scissor technique, followed by the barrier, SprayShield.

Online Atlas-Actual Surgical Adhesiolysis

 

Mysterious Abdominal Pain and Those Who Suffer

Before accepting a diagnosis of Crohn's disease, endometriosis or irritable bowel syndrome, study the all-too-common disorder: adhesions. Many sufferers of this medically hushed illness are misdiagnosed and may spend a lifetime suffering pain and other symptoms that could otherwise be corrected with a proper diagnosis. Adhesions elude the probing eye of standard medical tests, thus most sufferers will not receive an adhesions diagnosis in this manner. Listen carefully to the language a doctor will use when discussing your complaints. Should you hear, "narrow bowel," "narrowing of the bowel," you should ask the doctor to provide the proper medical terminology that is responsible for the "narrow bowel." (Adhesions often wrap around the bowel, but many physicians will not use the term adhesions or scar tissue).

If you have been diagnosed with Crohn's disease and are told the "narrowing of the bowel" is part of the disease process, make sure you have a conclusive diagnosis of Crohn's (granulomas must be present for a definitive diagnosis). Furthermore, a person who is sure they suffer from Crohn's disease may still be a candidate for adhesiolysis. Study, study, study. No one will care for YOU as YOU can. 

The Painful Education: Adhesions!

It is staggering how many people learn of adhesions only after undergoing a surgical procedure. Victim after victim of adhesion related disorder state they were not informed of the risk prior to surgery. Known as an iatrogenic disorder, disclosure of the risk for developing adhesions is largely ignored by the medical profession. While patient after patient is harmed, the surgeon continues to conduct each day with a "business as usual" attitude. No one holds the surgeon to the wall of accountability. Why? Simply because those who suffer are not outraged enough to demand change.

Clearly, it is the harmed patient who must rise up and demand legislation that will make necessary changes to the informed consent process. The surgeon does not disclose simply because he is not required to do so. When the prospective surgical patient learns of the risk for developing adhesions due to a surgical procedure, an informed patient then has the chance to weigh the benefit of surgery against the risk of developing adhesions. Certain patient knowledge is not financially beneficial to the medical profession. What surgeon openly informs the patient that his or her organs could end up fused together due to the surgery itself? Sorry folks, it ain't happening! 

Elective c-sections, unnecessary hysterectomies, gastric bypass, tummy tucks and hernia repair, are just some of the surgical procedures that can result in adhesion formation. Statistics are staggering: 93% of patients who undergo major abdominal or pelvic surgery will develop adhesions. Over 50% from that group will develop a problematic condition known as adhesion related disorder. 

Many women have written to say, "Had I known I could develop adhesions, I would not have agreed to an elective c-section birth." Many other women write, "Had I known I would end up with adhesions, I would not have had a hysterectomy." 

While many think the doctor has his or her best interest at heart going into surgery, minds are changed when the realization sets in that critical information was withheld from the patient. Sadly, even the medical giant, Johnson and Johnson, thinks it is YOUR responsibility to broach the subject of adhesion formation with your doctor. (Excerpt: And yet, many women don't know about adhesions and don't discuss the subject with their doctors before having gynecologic surgery) See: Adhesions Perhaps all the hoopla (read: cash) surrounding this miserable illness (barriers that work in Europe but are not FDA approved for the USA for instance) are the reason medical giants exist in the first place. The Money Barrier. But, I digress. 

Adhesions and The Surgeon.

Though the link below is in regards to a question about medical coding, the posting allows anyone who is interested in adhesions a peek into a surgical room when a surgeon encounters adhesions during an "attempted" hysterectomy. This posting speaks volumes regarding the complexity for the surgeon when adhesions are encountered, as well as the risk to the patient whose bowel is perforted (i.e. fenestrated) when an attempt is made to take down the adhesions. (Not to worry, however, as the perforation is controlled by "firing staples" into the area....) 

 

Note that the physician's report (at the end of the posting) states the attempt to lysis adhesions was "beyond our scope." A general surgeon is called in and he removes adhesions, but the decision is made to end the procedure as, "her pelvic pain could be secondary to the dense adhesions." While this person worries about correct medical coding, those who suffer from adhesions worry about the post-op condition of this poor woman.

Report

Adhesions. Adhesiolysis. Is There A Barrier In The House?

When going in for an adhesiolysis, the patient needs to know a barrier will be used to prevent the recurrence of adhesions. In the USA, there are available barriers, but it seems we hear more about repeat surgeries than we do success stories. Let's face it, if a person went in for rhinoplasty with knowledge they would have to repeat the same procedure every six months or so, most people would develop a a whole new appreciation for their nose. After all, how many surgeries can one's nose undergo without causing some major (and visible) damage to the 'front and center' of one's face? (Michael Jackson is an example). Likewise, repeat surgeries for adhesions is damaging to the body, though the damage is far removed from view. (Out of sight, out of mind?) 

Sadly, many adhesion sufferers do not realize surgical damage has been occurring until told they have a frozen abdomen. (Repeat surgeries without an adequate barrier not only causes more adhesion formation, but more dense adhesions as well.) In fact, at any given time, the adhesion sufferer may find the surgeon aborts a surgical procedure and refuses to touch the patient further. Many people are in shock when this happens. Further, a doctor may also dismiss this person, since you are now a "problem" patient, i.e., liability. 

At the same time, other adhesion sufferers may be aware of the risk of developing a frozen abdomen, yet throw caution to the wind in exchange for relief from pain! Many women report that each adhesiolysis often provides a few months free from pain, thus it is a risk they are willing to take. 

Clearly, there are problems with certain barriers that are available for use in the USA, as evidenced by this lawsuit that defines stiff, hard, brittle pieces of plastic being found in the colon of the plaintiff. Unbelievably, though a gastroenterologist removed these pieces of plastic from the plaintiff and stated that the material had to be the SurgiWrap barrier, the plaintiff herself was challenged that she "had not produced any admissible evidence that the SurgiWrap suffered from any manufacturing defect or that SurgiWrap was the cause of any injury to her......." (even though other pieces remain embedded in her colon).

See: Barrier

Further, another article on the barrier SepraFilm: SepraFilm 

Coviden, the USA maker of SprayShield adhesion barrier, which has proved to be a leader in successful adhesiolysis in Germany, has yet to receive FDA approval for use in surgeries performed in the USA. While the FDA surely has the best interest of the patient at heart, one must ask: where is the logic in allowing repeat, (and EXPENSIVE!) adhesiolysis that can only result in a debilitating, life-threatening condition known as frozen abdomen while withholding the use of a barrier that seems to be performing well in another country? Perhaps the FDA could better serve the suffering adhesion population by allowing the PATIENT to choose this product and simply sign a release waiver? (Power to the people, anyone?) 

For those who suffer, withholding the use of a promising medical product can be likened to a hungry man viewing food (solution) in the store window, having the money in one's pocket to buy (insurance), yet the store keeper's hands are tied due to governmental control. Granted, the store keeper is excited about his sandwiches and muffins, yet his door remains locked; he cannot allow you to come in and purchase. (The FDA requires he perform more clinical trials on the food while you fall in the street and wither away.) 

Maybe, just maybe, the FDA actual marvels at Coviden's "liquid bandaid," but has shaken hands much too long with the medical giants who steer particular markets of medicine? Nah. Not our government. 

See: SprayShield  

Contact list for patients who have had adhesiolysis with SprayGel or SprayShield in Germany (You must enter the password 'endogyn' for access to this link):

Patients

Adhesions and The Ovaries

Statistics show that 40% of women who have endometriosis may deal with infertility issues. Adhesions are said to be the cause in 15% of cases of infertility. In cases of endometriosis, it is generally adhesion formation caused by the inflammatory condition of endometriosis that is the actual cause behind the inability to conceive. You can read more about the issues surrounding the conditions that can cause infertility at this link: 

Adhesions and The Ovaries 

Abdominal Pain? Adhesions? How About Another Test?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Ask anyone who is sick about tests. Tests, tests, and more tests.  For the person suffering abdominal pain, tests are in order. The sufferer is readily willing to be tested, as he or she is searching for an answer to suffering. We all know the ill seek out a doctor, fully expecting to get well and get on with life; to put pain and problems behind them. Today, however, with many areas of US medicine turning into treatments rather than cures, the patient is often thrown on the road to nowhere-the proverbial medical conveyor belt that has no brake. 

For the ill patient who is at the doctor's mercy, it is confusing and maddening. Yes, every patient expects tests and lab work in the beginning. However, for those who suffer abdominal pain, the nightmare to find a solution to illness could be years in the making. Yes, years. Worse yet, unless you happen upon a doctor who has your best interest at heart, a complete resolution may never materialize. Welcome, lifetime client. (Thankfully, the ill do not know this going in). Most patients jump though all the medical hoops time and time again, after all, how else can one expect to finally get well? For adhesions sufferers, many will also be rolled into the OR time and time again. After all, there is no "cure" for adhesion sufferers. Pity. The doctor is doing all he can do and you just happen to be a "worse-case" scenario adhesions sufferer. Well, maybe. Maybe not. 

Sadly, medicine in America often seems to work against the patient, especially those suffering from adhesions. If you have insurance, you feel relieved. So does your doctor. He has a business to run. You will undergo all the tests time and again because YOU WANT TO GET WELL. You are not thinking about the insurance submittals for those tests. Yes, you may have a co-pay, but it is nothing compared to those tests that often cost thousands upon thousands. You just hand over that insurance card, a co-pay, and you are hopeful that this go around will produce some concrete results. Fingers crossed.

But, no.

After years of frustration and watching your life dwindle away, you hear there is hope in Europe. Hmmmmmm. Weak, but still eager to regain your life, your excitement builds. That is, until you realize your insurance does not cover out-of-country treatments. You phone your insurance, you explain your dilemma, you ask for a patient advocate, you scream from the rooftops that you are SICK! 

But, no. Your policy does not cover out-of-country treatments.

Thankfully, you have the insurance card. You pull it from your wallet. You stare at it. It has your name on it, but you start to wonder: just WHO benefits from its use?

 

*Note: In all fairness, many doctors in the USA are kind, compassionate, and caring physicians who have the patients' best interest at heart. Unfortunately, many others simply follow the money. 

 

Healthcare In America

From the man who authored How Doctors Think, Jerome Groopman, MD, along with Pamela Hartzband, MD, speak out about American health care being reduced to a money making factory. Quote: "Patients are no longer patients, but rather customers or consumers." 

Adhesion sufferers can certainly attest to the money-merry-go-round they encounter when entering a doctor's office. But wait, before we step into the doctor's office, the money-merry-go-round actually begins with the phone call to make an appointment. The first question we are asked: what is the name of your insurance company? Even as a patient (or parent of a patient) we have finally become accustomed to first hearing the insurance question. We may still heave a disheartened sigh, but nowadays, we certainly expect as much.

Ill. Just hope it doesn't happen to you. 

Once the patient steps into the doctor's office, the ride continues. The co-pay is collected and the patient is told to have a seat. If you are lucky, you might get ten minutes to explain your pain and problems before you are sent out for tests. Tests that (hopefully) will aid the physician in his analogy as to what ails you. But, if not, he will still reap a financial reward for the tests performed. Well...at least one of you will benefit. 

For those who suffer from adhesions, the merry-go-round may never stop. Most people who suffer from adhesions will wonder what in the Sam Hill is wrong with them as they roam a medical dry desert completely deplete of any oasis. In fact, statistics show the average adhesion sufferer will search 7-10 years for an answer to pain. Perhaps even worse, (yes, it can get worse) is the adhesion sufferer who is fortunate enough to finally get a correct diagnosis, only then may end up as longtime client to a surgeon who will knowingly harm you further by operating again and again until you are--no, not well--but rather, frozen.

Once you are frozen, he will throw up his hands and tell you he has done all he can do for you and he is now dismissing you as a patient. 

Huh?

Yes, sadly, once you've developed a frozen abdomen due to repeat surgeries, you are no longer a source of income for the physician--er,-- a candidate for surgical attempts to "improve" your health. You, my friend, are out the door. 

Money Factory

Care About Your Care.Org

According to careaboutyourcare.org, Americans spend a whopping $700 billion a year on health care that does not improve one's health! $700 BILLION! If you've been a victim of this broken medical system, you are not surprised. Speaking from experience, my husband and I spent a small fortune trying to find help for our daughter who was gravely ill. We made appointment with one doctor after another, to no avail. We traveled by car and plane, from one city to the next, to no avail. Fourteen years into our search, we finally learned Melissa was suffering from adhesions. Two surgeries in the USA by two separate surgeons' failed her. Meeting with yet another US surgeon who reviewed Melissa's last surgical video, he explained why we should take her to Europe for treatment. Thankfully, we followed that advice. Today, eight years later, Melissa remains free from the pain that had ruled her life for years on end. 

Hopefully, Care About Your Care will prove to be a positive tool in the transformation of the US medical system that fails so many. I have my doubts, however, that we will see change for those who suffer from adhesions, as this particular illness has long been guarded by the medical community at large. Following is the link to care about your care:

CareAboutYourCare