Please click the link below for the press release on informed consent:
If you suffer from adhesions, it often seems the suffering will never end. I am thankful my daughter had only had two surgeries for adhesions, as I later learned that each inadequate surgical attempt to remove adhesions will march the sufferer toward a medical condition known as frozen abdomen.
While we can be grateful for every sincere doctor who tries to help those who suffer from adhesions, the condition itself behooves the sufferer to become an educated patient. Unfortunately, repeat surgery has become very commonplace for those who suffer from adhesions. Since surgery is the number one cause of adhesions, inadequate surgery to rid the suffer of adhesions will most often result in more adhesion formation. Thus, a vicious cycle begins.
Sufferers often report a few months free from pain after an inadequate adhesiolysis, thus the sufferer may mentally chalk this particular illness up as one that falls under a maintenance category. Like changing the oil in a car is a requirement for optimal performance, many adhesion sufferers (most often, women) begin to believe that the only way to outsmart the painful effects brought on by adhesions is one-more-surgery.
Sadly, many sufferers are in the dark when it comes to the consequences of these multiple adhesiolysis procedures.
Angela Patterson, who we reported on in October, PRWeb was deemed "inoperable" by a medical surgeon in the USA who aborted an attempted adhesiolysis due to finding the abdomen "frozen." Angela felt this particular center was her last hope, as she had already been turned away by other surgeons who knew her medical history reflected a "frozen abdomen." This particular center, however, had provided her hope via phone conversations, even though the surgeon was aware of the frozen abdomen. Like many patients, Angela met the criteria required by the facility ($1,200 cash up front) and she gathered the funds for flights, hotel and meals. Once again, however, Angela's hopes were dashed when the surgeon quickly aborted the procedure due to...a frozen abdomen!
When Angela contacted me, I referred her to Dr. Daniel Kruschinski in Germany. Dr. Kruschinski has performed surgery on many cases deemed "inoperable." Only a few months later, Angela was on her way to Germany:
See: Angela's case file
When Angela arrived back home after a successful adhesiolysis in Germany, I spoke to her by phone. The joy, excitement and laughter in her voice reminded me, once again, of my purpose in promoting awareness of this illness. Angela's life, haunted so many years by the devastating effects of adhesions brought about by multiple surgeries; only to be further reduced to complete hopelessness when deemed "inoperable" has now taken a swift 360 degree turn! Yes, God can make a way where there seems to be no way! Best wishes to Angela as she continues to heal and live her life again!
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.
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.
More and more Americans are traveling abroad for medical treatment, much as we did in 2003 to seek help for our daughter after surgeries in the USA failed her. While some travel abroad due to soaring medical costs here at home, others go to seek superior treatment than what is available here. For those who suffer from adhesions, insurance may cover treatment here at home (surgery, specifically termed: adhesiolysis) but what good is coverage if the patient only ends up worse? This was the dilemma we faced with our daughter. While insurance refused to pay for an advanced, out-of-country treatment, we decided the out of pocket cost was worth the chance for wellness. Today, eight years later, Melissa remains well and is living life to the fullest.
Click to view:
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.
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.
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).
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.
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):