ONE OPTION LEFT
I realized I did have one option left: I could go to the doctor, who had moved to my hometown (population of 600) in 1971. His clinic was less than a mile from where I lived. I was somewhat skeptical though; because this doctor was an osteopath. I remembered that years ago my mother had commented that "osteopaths are not real medical doctors". I was a little skeptical about making an appointment; and I didn't have too much hope that this osteopathic doctor could help me!
DR. ROBERT SAMPSON
In September 1976 I took a chance - and made an appointment with Dr. Robert Sampson. Had I known what a wonderful person and doctor Dr. Robert Sampson was, I would have gone to him when he moved to town; but I actually thought the best doctors were at the large medical centers - such as where I had already been evaluated.
Almost right away I sensed that Dr. Sampson was genuinely concerned about me and that he wanted to try to help me. As the result of my very first appointment, Dr. Sampson recognized I was suffering from a very severe clinical depression; and he proceeded to do what he could to help me. At this appointment Dr. Sampson took time to explain the mind-body connection in words that I could understand.
With Dr. Sampson's personal interest in wanting to help me, I was able to gain back some of the trust and respect I had lost for the many doctors I had previously been to.
At the conclusion of my appointment, he gave me a prescription for Amitriptyline(10mg), and told me this anti-depressant would help me sleep and also provide some relief from pain.
Within a few weeks, the intensity of my pain started to slowly diminish to about a 6 or 7 on a scale of 1-10. I really appreciated the pain-relieving qualities of Amitriptyline!! Finally, I was able to sleep through the night without being kept awake by sleep-robbing pain. I wasn't pain-free, by any means; but at least now I wasn't totally incapacitated by pain!
MAYO CLINIC MEDICAL RECORDS
In 1996 I requested all of my Mayo Clinic medical records. In the medical report from my very first appointment, I saw the words, psychoneurosis and hypochondriac!! It was then that I begin to understand why I had been mis-treated the way I had been by certain specialists. I had been labeled as being mentally ill !! Since none of the tests were positive for a disease process, according to Mayo Clinic doctors there was no reason for my pain - it was " all in my head."
A TURNING POINT
Endometriosis had been mentioned in my 1970 laparotomy report. In 1996 I joined the Endometriosis Association (EA); because that was the only way I could purchase any of their educational materials. I immediately ordered almost all of their books, pamphlets, audio tapes, and video tapes!! As a result of reading the EA educational materials, I found an important clue!! I learned that a diagnostic laparoscopy is the only way that endometriois can be diagnosed. I had never been offered a diagnostic laparoscopy!!! Through the EA I was given the names of 2 endometriosis specialists from my state.
In 1997 I made an appointment with an endometriosis specialist. We talked non-stop for 45 minutes. Then he told me my symptoms sounded more like adhesions than endometriosis. ADHESIONS??? I had never heard of adhesions!! No doctor had ever mentioned adhesions to me!!
On August 1, 1997 I had a diagnostic laparoscopy; and I was finally diagnosed correctly as having "massive adhesions that had attached my omentum to my abdominal wall...the entire length of my 1970 laparotomy incision and 2" across on each side of the incision. It was such a relief to be rid of the searing pain; but on the 10th day I was once again in pain.
I tried to make an appointment with this doctor; but I was told I couldn't make an appointment - he did not want to see me again!! Why he had dropped me as a patient???
I found the answer to my question - months later on the Internet!! I learned that Medicare's low reimbursement schedule for adhesiolysis procedures was the reason I was being dropped as a patient. Medicare and my supplemental insurance paid less than one-half of what my surgeon was asking in his bill !! He had to "write off " the balance and could not bill me for the balance!!
Medicare rules are intended to protect senior citizens. We had to pay only $13; but I was being denied care by the one doctor, who had believed me and correctly diagnosed the source of my pain. It had taken me 27 years to find this doctor - and now - since Medicare did not pay this doctor's entire bill, once again I was without a doctor that I could trust!!
ARE ADHESIONS THE "BEST KEPT SECRET"?
Words cannot adequately express the harm unresolved intractable pain has done to me, my family and my relationships!! It makes me very angry to learn that adhesions are the way that a person's body heals after a surgical procedure. It seems to me adhesions must be "the best kept secret" of the medical profession!!
COMMUNITY MEDICAL CENTER at SCRANTON, PA
Since my failed 1997 adhesiolysis, I have done extensive research on everything to do with adhesions. As a result I learned the names of Harry Reich, MD and Jay Redan, MD, who are having "some" success with adhesiolysis procedures at Scranton, PA.. I wanted to have these surgeons for my surgery; but, I was told that these doctors refuse to accept Medicare's reimbursement schedule for adhesiolysis procedures. Thus I couldn't have surgery at Scranton. Medicare reimburses adhesiolysis procedures to surgeons at one standard fee - without any consideration given to how long the procedure takes - nor any consideration given regarding the skill and experience of the surgeons!
I offered to self-pay; but was told the hospital would be subject to a fine by Medicine - if Drs. Reich and Redan performed my surgery at Scranton, PA.
ST. VINCENT'S IN NEW YORK
I was offered an alternative: Drs. Reich and Redan could perform my surgery at St. Vincent's Hospital in NY!! If I had my surgery in New York, Medicare and my supplemental insurance would pay "something" toward the anesthesiologist and hospital bills. In New York...I could self-pay and have Drs. Reich and Redan as my surgeons?? This doesn't make too much sense!! What I, a Medicare patient, cannot do in Pennsylvania, I CAN do in New York??
I HAD SURGERY AT DUISBURG, GERMANY INSTEAD
When I learned every would be very expensive in New York (with rooms renting $250 -$300 a day) we decided I could not afford to have surgery in New York!! Instead, I decided to have Dr. Korell as my surgeon. In November 2001, my husband and I went to Duisburg, Germany - where Dr. Korell is Chief of Surgery.
OUR TOTAL EXPENSES CAME TO LESS THAN $7,000...and included ALL of the following: round-trip airfare for me and my husband; apartment and food - for 18 days; hospital room for total of 8 days; all pre-surgical tests; adhesiolysis procedure; second-look laparoscopy 7 days later; Dr. Korell's fees for the two surgeries ...
PLUS: We traveled to Mulheim, Germany for a Craft Fair; took a Bus Tour of the historical part of Cologne, Germany; took a train to Belgium and spent the weekend at Ghent and Bruges, Belgium
TO REDUCE MEDICARE AND MEDICAID COSTS
In November 2001 - I learned that Medicare does not pay for out of the country surgery; but after reading the above paragraph, Medicare may want to change their policy. Medicare could include out-of-country surgery as one of its options. .
I know of someone, who had laparoscopic surgery for adhesions at Scranton, PA. Her total bill - for surgery-related expenses only!! - came to over $35,000!!!
If Medicare and Medicaid are trying to reduce their costs, there is a tremendous difference in cost from a surgery done in the United States and a surgery done in Germany!!
It is my mission to do whatever I can to make a difference in how Adhesion Related Disorder (ARD) is treated by the medical profession and health insurance companies. We were extremely lucky to have health insurance over the 32 years that I sought medical care!!
Something is wrong with the medical system in the United States!! Some drastic changes need to be made!
* * * *
1.) A national awareness and education program needs to be implemented - to inform the people about the seriousness of Adhesions Related Disorder (ARD). This needs to happen - soon!!
2.) ARD needs to be approved and included with other diseases - with a code of its own - a code that will reimburse surgeons for the amount of time it actually takes to lyse adhesions !!
3.) More funds are needed for research - to step up the search for a substance that will offer greater protection from adhesions - without causing further harm to the patient!
4.) Adhesion sufferers need to be able to get pain medications - prescribed in adequate dosages! Thirty pills for thirty days is barbaric!!
5.) An investigation needs to be done to determine: why do so many doctors tell their patients that adhesions do not cause pain?
6.) Frequently repeated surgeries on the same person -with the same outcome - need to be investigated.