Hope For Those Who Suffer From Adhesion Related Disorder.

Mama Called The Doctor And The Doctor Said....

Adhesions sufferers often get the monkey advice from doctors. No matter how many times they show up at the doctor's office complaining of pain and hoping for relief, they often leave feeling like the monkey who was jumping on the bed. It doesn't matter if the monkey fell off and bumped his head, the doctor delivers a rather lame answer to the monkey's suffering each and every time the monkey needs medical assistance: NO MORE MONKEYS JUMPING ON THE BED!

"Well, duh," the monkey says, as he rubs his smarting head.

Most adhesions sufferers have received the monkey advice more times than they care to remember, which goes something like this:

"Your tests results were normal."

"Are you depressed?"

"What's going on at home?"

"Are you being abused?"

Skeptical eyes precede each statement, of course; another monkey trait the sufferer knows all too well.

The adhesions sufferer, who had difficulty just making it to the doctor's appointment, must now pay for monkey advice.

As she (he) makes her way back to her car, tears well up in her eyes. The ride back home is often one of complete numbness. There's just something about monkey advice that is so very demeaning to the person whose body is being destroyed by illness and pain.

When my daughter became deathly ill at age thirteen, it seemed we would lose her. Many times her bouts of pain were so severe she was left screaming; her body drenched in perspiration. Even though her pain was obvious, her body deteriorating, we received a lot of monkey advice before a doctor finally chose to diagnose her with Crohn's disease. (A diagnosis that was later proved to be incorrect).

Prior to the diagnosis, however, my husband and I, along with our daughter, suffered further emotional trauma when our daughter was taken aside by a monkey doctor and asked if she was being abused at home. This questioning, perhaps well intended, was not only devastating to my husband and me when we later learned of it, it was also emotionally trying to our child who at such a tender young age knew she was not going to receive help from the doctor who stood before her.

Today, our daughter is well. The journey to wellness however, was fraught with a jungle full of monkeys who chattered meaningless and useless monkey advice, while leaving our daughter to suffer in horrid pain and all the while emptying our pockets in the process.

Yes, there are good (excellent) doctors out there, as it was a doctor (surgeon) who finally brought our child from her living hell. We owe a debt of gratitude to this brilliant surgeon. Our entire family became well when our loved one was finally well.

My passion to promote adhesions awareness is renewed each day when I see the joyful life my daughter now lives. My hope is that no other little girl or family spend countless years trying to machete their way through the jungle of medical monkeys and lame advice while a loved one is left to suffer in pain.

Note: Monkey Advice is an ezine article.

Adhesions Update.

I'm often asked: how is your daughter today?

Here is a picture of my daughter and her son during Christmas 2009. As you can see, she has not only regained her life, she is fully living life again! 

From the time we flew out of Germany in 2003, my daughter has been well. Given that she had suffered an agonizing 14 years, we consider her turnaround to be nothing short of a miracle. 

However, we all know that "miracles" often only come on the heel of great trial. For adhesions sufferers, the journey toward renewed health can be the most difficult challenge they will ever face. 

Being that my daughter and I have "been there, done that," we know what worked and what didn't.

It is disheartening when a doctor makes promises prior to surgery only to become "baffled" after surgery as he attempts to explain away the reasons his original high expectations failed you. 

Many adhesions sufferers have an all too common post-op report: "The doctor said I was the worst case he's ever seen...he did all he could." This is often followed by..."I'll never be well."

Clearly, adhesions sufferers have their work cut out for them if they want to regain quality of life. 

Just as one man has his way of repairing a sagging ceiling and believes it to be the only way to repair a sagging ceiling, another man may have a better idea. The person with the sagging ceiling only wants one thing: to look up at his ceiling and see it is repaired! We don't want to hear, "Your ceiling was the worst I've ever seen...," after we've authorized (and paid) him to do the job. 

Granted, surgeons' are often "going in blindly," much to the contrary of a ceiling repairman. However, just as there are ceiling repairmen who do a quality job and you are pleased with the outcome, there are also those (and most of us have encountered them) who do a poor job and then blame their lack of skill on your poorly built home. 

Likewise, there are surgeons' who will take a stab at your case--no pun intended--simply because they too have a mortgage, golf club fees, and kids who need braces. Yes, sad to say, but some physicians have motive that far outweigh your hopes to become well. 

From someone who walked the medical maze with an extremely ill child, I hope to save you some steps..or at least help you avoid the jagged crooks in the road (pun intended!)

Here's just a small list of things to consider: Research the doctor and his method of adhesiolysis. Ask questions. Ask for names and phone numbers of prior patients who are willing to speak about their outcome. (Yes, more and more doctors are happy to provide a list of contacts). Keep in mind that one person's bad (or good) experience does not indicate you will have a bad (or good) experience; each case is different. What type of barrier will be used during surgery? Is the barrier one that has proven to be successful? Will he perform laparoscopic (minimally invasive) surgery? If not, why not? (Laparotomy should be avoided if at all possible.) How often has he resorted to laparotomy (open incision) after beginning laparoscopically? Does he inform the patient (in writing) the chance that a laparotomy may be required? 

Too often we trust the doctor simply because he is a doctor. Melissa and I began her journey with that same trust. Unfortunately, we had to learn things the hard way: 10 minute office visits followed by a plethora of tests, doctors, and specialists would never be the answer to her suffering. 

For the adhesions sufferer, the chance for healing will only come via the physician who is keen to this disorder, has a tried and true method of adhesiolysis, adequate tools and products to perform the job, as well as the gift of being a surgeon who truly cares about his patient. 

Massage Therapy For Adhesions?

Questions, questions, questions. I get questions! And, I am always happy to answer! 

Please keep in mind, however, as is stated at this blog, I am not providing medical advice. The postings and comments within this blog are written to promote awareness of ARD, an illness that stole 14 years from my daughter's life. (She is now well). 

All too often, I'm asked this question: what do you think of massage therapy for adhesions? 

Before I elaborate, I will share a link so you can read the statement about this subject as is stated at the following website:

Massage Therapy For Adhesions?

Now, for my take:

I've heard from many women suffering from horrid adhesion pain who have tried massage therapy. To date, none have had a positive report, with one woman writing to tell me her pain and problems have now increased. Though massage therapy may work in some instances--say sport injuries--adhesions which entrap internal organs such as the intestines, liver, diaphragm, stomach and female organs not only leave the sufferer debilitated, massage therapy to the upper and lower abdominal areas may only prove to cause further trauma to affected organs. Since trauma to the body causes adhesions, many adhesion sufferers are simply not willing to "try" massage therapy. 

While some websites insist the right therapist can free abdominal & pelvic adhesions, the majority of studies and surgeons report that adhesiolysis--surgical removal of adhesions--is the only method by which the pain and symptoms caused by problematic adhesions of the upper and lower abdominal can be alleviated. Even in adhesiolysis, many surgeons' will perform surgery knowing they have limited resources to produce a positive outcome (an adequate barrier, for instance). While many surgeons' promise a positive outcome, while knowing the opposite will be true, other surgeons are candid when explaining to the sufferer they may receive little to no relief from a surgical procedure. These surgeons are often willing to perform an adhesiolysis, but want the patient to know upfront the marginal results when undergoing such surgery.

Since I am often asked if we ever went the route of massage therapy for Melissa, I decided it was time to post the answer: No. I did research massage therapy after Melissa's first failed adhesioysis, however, because Melissa had such great abdominal pain and had guarded her stomach for years (so afraid someone or something might touch it) massage therapy never seemed a logical "treatment" to request of her. When she checked out the information on her own, she was adamant that no one was touching her painful abdominal area.

So, for all who ask, my opinion remains the same: abdominal adhesions require an expert surgeon who is not only knowledgeable to this specific malady, but who has the resources, as well as the skill, to bring the patient back to health. 

After watching my daughter suffer enormous pain/vomiting/agony during her teen years and most of her twenties, I am only too happy to tell other sufferers what finally worked for her. Dr. Daniel Kruschinski was our answer to many years of earnest prayer. Dr. Kruschinski is not only brilliant, talented, and well versed in the field of adhesions, he is perhaps the only surgeon in the entire world who can claim such an extended list of former adhesion sufferers. Because he is a surgeon/doctor who clearly understands the devastating toll this illness brings to the sufferer as well as their loved ones, he connects to patients and family members on a level that is simply unheard of in today's world of medicine. Most doctors/surgeons do not provide "references" for future patients, however, this is not the case with Dr. Kruschinski. He has a devoted following of patients who are happy to share their story with those who suffer from adhesions.

Simply put, Dr. Kruschinski has used his zeal and talent to heal many who suffer from this painful disorder. I am only one of many who can't thank him enough! My daughter now enjoys a beautiful life, free from pain and suffering. Given the nature of this illness, that is simply awesome!

Dr. Daniel Kruschinski

Patient Contacts

Posted at 01:14 PM | Permalink

Adhesions-What A Pain!

Adhesions-What A Pain!

Adhesions. The Neglected Patient.

Adhesions sufferers may be the most commonly neglected patient among those who suffer illness. Doctors often belittle abdominal or pelvic pain, quickly passing it off as IBS (irritable bowel syndrome) or "nerves". On average, the adhesions sufferer will search 7-10 years for an answer to their pain. This medical neglect can not only lead to diminished quality of life; adhesions that involve the bowel can cause bowel obstructions, which can result in death if ignored. 

If you are suffering abdominal or pelvic pain, have had abdominal or pelvic surgery, or have been told your pain is IBS, endometriosis, Crohn's disease, ovarian cysts, or any other inflammatory condition, do yourself a favor and study the symptoms of adhesions. 

Adhesions sufferers often deal with nausea, vomiting, a feeling of pulling or tearing pain, tender and distended stomach, back pain, difficulty standing uprightly and even migraine headaches. 

Surgery is the number one cause of adhesions, thus the silence among physicians. However, inflammation can also cause adhesion formation, leaving the unsuspecting patient searching in vain for an answer to their pain and symptoms. Since adhesions do not show up on standard medical tests, the sufferer is often dismissed by physicians as being "depressed."

September is ARD Awareness Month!

September is here! With it comes the opportunity for you to do your part in promoting ARD awareness. We continue to offer free ARD awareness pins. All you need to do is send a SASE (self addressed stamped envelope) to: 

ARD AWARENESS

PO BOX 787

WEATHERFORD, TEXAS 

76086

©2008 KarenSteward All Rights Reserved

C-Sections. What You Need To Know Prior To Consent.

As unnecessary c-sections continue to rise, many mothers-to-be are uninformed about the risks involved when giving birth via surgery. Here is yet another article about one risk:

C-Sections

Stuck In A Body of Pain. Adhesions.

Imagine one morning you wake and begin to throw the covers off so you can rise to meet the day. Only on this morning you have a problem. Your arm doesn't work. In fact, the mere attempt to toss covers has left you in excruciating pain. You try to lift your arm to inspect it-figure out what is wrong- but your arm doesn't budge. This second attempt has again left you in severe pain. You begin to cry as you look down at your arm. What's wrong with it? 

Imagine how devastated you would be to find bands of scar tissue had formed during the night and your arm is now adhered to the side of your torso. You, my friend, are stuck.

What would you do? Would you be aggravated at yourself for sleeping in the nude? After all, clothing would have created a barrier between the two surfaces preventing them from adhering to one another. You scold yourself. Why didn't you think of this before you went to bed? Would you be anxious to find a doctor who could free your arm from your torso or would you just make a decision to be very careful not to ever move that arm again? 

Thank goodness, the above scenario is only imaginary. For those who suffer from adhesions, however, the above scenario is a rudimentary but simple way to explain adhesions.

When trauma (a blow to the abdomen or pelvic region) occurs, adhesions can develop. Surgery is also trauma to the body and the number one cause of adhesion formation. Endometriosis, PID, Crohn's disease, ovarian cysts, or any inflammatory condition is also a breeding ground for adhesion formation. In addition, radiation can cause adhesion formation. Simply put, internal organs that are designed to move freely within the abdominal cavity are now compromised by bands of scar tissue-adhesions. These bands of scar tissue can create a myriad of health problems: abdominal pain, nausea, vomiting, back pain, restriction of mobility, infertility, excruciating menstrual pain (that may be medically attributed solely to "endometriosis"), difficulty breathing, bowel obstructions, etc. 

The adhesions sufferer, unfortunately, is an ill person who must educate him or her self. Adhesions surgery (adhesiolysis) is a tedious, risky, and often time consuming procedure which necessitates the surgeon who is well versed in this delicate and often controversial procedure. All too often the adhesions sufferer wakes from surgery only to find the pain has increased rather than decreased. (As happened twice in my daughter's case).

SprayShield is a product made by Coviden which is proving to be a highly successful adhesions barrier; a crucial element in adhesiolysis. Dr. Daniel Kruschinski provides the surgical approach at this link: AdhesionsSurgery

Adhesions. Video Information and Surgical Procedures.

Breaking Free From Adhesion Related Disorder!

Author, Karen Steward. Copy Editor, Jill Ronsley. Doctors: Bound by Secrecy? Victims: Bound by Pain! is the inspirational, true story of a mother and daughter's 14-year journey for a cure to an agonizing and often misdiagnosed, debilitating disease known as adhesions. Melissa Steward was like any other happy, bubbly teen before illness struck at the age of 13. Doctors gave a diagnosis of Crohn's disease and prescribed corticosteroids as treatment. However, the powerful drugs proved futile against the constant pain, nausea and vomiting that tortured the teen day after day. Believing her daughter had been misdiagnosed, Karen set out on her never-ending quest for an answer. Karen relates the riveting tale of their desperate cry for help and ultimate triumphant journey transversing the globe. Along the way, she provides a glimpse into the inner sanctum and frustrating maze of modern medicine. 

Doctors: Bound By Secrecy? Victims: Bound By Pain! unravels the mystery behind adhesions. Since adhesions don't show up on standard medical tests, victims are often misdiagnosed, treated for illnesses they do not have, labeled as depressed-and left to suffer-often in crippling pain. Surgery is the leading cause of adhesion formation, yet patients rarely are informed of the risk. Most ARD sufferers will spend seven to ten years wandering from one doctor to the next in an effort to find someone who will validate their pain and help put an end to the suffering. Doctors: Bound By Secrecy? Victims: Bound By Pain! is a heartrending story, told with a sense of humor and wit, of a mother trying to find hope and healing for her beloved, ailing daughter. It is an inspiring story of perseverance-against all medical odds-and the final triumph over an incapacitating illness. The writing of Melissa's trying journey opens the windows of knowledge to adhesion related disorder, (ARD), forever unmasking this prevalent, yet medically hushed condition. 

*Doctors: Bound By Secrecy? Victims: Bound By Pain! can be purchased at this blog or at Amazon:

BOOK

Can't afford the book? Ask your local library to order a copy! Karen will send a copy of the book to any library in the USA for a $10 fee which covers the cost of shipping and handling!

Send $10 to: ELM Publishing, Inc. PO Box 787, Weatherford Texas 76086. *Note: this offer is for libraries only. Checks must be from a legitimate public library. Thank you!