Hope For Those Who Suffer From Adhesion Related Disorder.

Frozen Abdomen. ARD Sufferer Seeks Help In Europe

Click here: Angela, a woman who has suffered many years from adhesion related disorder, will be going to Europe seeking help for her condition. A synopsis of her story can be read at karensteward.com. Many prayers and all the best wishes, Angela! 

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

Endometriosis and Pain!

Adhesions are ruling the lives of many women. Abdominal pain, pelvic pain, nausea, vomiting, back pain, excruciating menstrual pain (beyond typical cramps) could all be signs that you may have adhesions. While endometriosis makes a billboard appearance in the world-most everyone has heard of endometriosis-adhesions barely get a whisper. Any inflammatory condition, such as endometriosis, ovarian cysts, Crohn's disease, etc., can cause adhesion formation.

Adhesions can be completely debilitating when this scar tissue adheres internal organs together. Period pain that is beyond typical monthly cramps may signify fallopian tubes that are tethered to the pelvic floor by scar tissue (adhesions). While some women may suffer solely from endometriosis, other women may be actually suffering from adhesions that the doctor has diagnosed (and treated) as endometriosis. Adhesions are all too often a subsequent factor of endometriosis, a result of inflammation in the body due to endometriosis, yet the physician will rarely mention this subsequent disorder. While some cases of endometriosis may cause no scarring (adhesions), other cases will reveal little endometriosis with large amounts of scarring (adhesions). In these cases, adhesions are the cause of debilitating pain, however, most women or young girls will not be hearing this from the physician. Today, much focus is on endometriosis and the pain that it causes, the treatments available, while little to nothing is said about a debilitating condition known as adhesions. Each woman must be her own best doctor and research her condition rather than succumbing to treatments for a condition she just may not have. 

Discover Winner!

Wow, we had a lot of names entered for the gift card! Thanks to all who participated!

This morning I asked my granddaughter to choose a name. The winner is Carrie Blanton! Congratulations, Carrie! We will send you an email and mail your card out asap! 

Gingirl, Rest In Peace.

My little grand-dog, Gingirl, was a feisty little love and beyond crazy, happy when she came to see Gram and Gramps. My daughter often dropped her off, which meant our own little dog, Pepper, had to retreat outdoors; for when Gingirl arrived, she ruled! She was always so excited to see us that she ran like a wild Indian all through the house, yelping at the top of her lungs. She brought big smiles to our hearts and often made me think how we should all be so exuberant when we see those we love! 

When my daughter would return to pick her up, Gingirl would run and hide. Just like a grandchild, she never wanted to go home. Miranda would have to chase her from room to room and when she finally caught her, Gingirl would snap and growl at her, (a hilarious show that my husband and I thoroughly anticipated each time Miranda returned.) One time Miranda grabbed her up and Gingirl was growling and snapping, as always, when suddenly she slightly bit Miranda's finger. Miranda was a typical mom, "Did you just BITE me? Oh no! You didn't just bite me!" (Oh yes, I think she did). lol. Of course, Pepper was more than ready for her to leave, but we never let on to Gingirl that we had any devotion at all to her number one arch enemy. Gingirl was one little dog who brought a lot of laughter and joy into our lives. And, Miranda was the best master to this feisty little one. She doted on her for many wonderful years...and until the very end. Rest in peace sweet girl. We will miss you dearly.