My problem with chronic pain actually began in July 1969 when, as the result of a very severe kidney stone attack, I was hospitalized for 10 days on demerol and finally morphine before the kidney stone finally passed. Unfortunately, I continued to suffer from chronic pain.
This led to a laparotomy in February 1970; and the pain returned 5 days later. My surgeon then decided to treat me for endometriosis. I was prescribed Enovid and Combid until in November 1970 I developed deep thrombophlebitis of my lower left leg and had to spend a week confined to a bed in the hospital!! As a result I could no longer use birth control medications!!
So in July 1972 I literally had to beg my doctor for a hysterectomy. I knew I couldn't handle any more responsibilities; because I was already failing as a mother ( for our 5 children ages 5-15 ) and as a marriage partner. This debilitating pain was dominating my life not only during the day but also at night!! Because of constant pain, I was unable to sleep at night and unable to function during the day!! I was also losing my ability to concentrate!! There is no way that I can adequately describe the intensity of the pain I had to endure...especially from 1970-1976!! And the worst part was the many doctors, I had seen, NEVER prescribed pain medication!!
In 1976 an osteopathic doctor recognized that I was suffering from a clinical depression. He spent alot of time explaining the Mind-Body Connection; and he prescribed the anti-depressant, Amitriptyline. Within a few weeks I started to feel some relief from the pain; and finally I was able to sleep through the night without waking up in pain!!
>From 1971 to 1998 I had been to the Mayo Clinic 6 times. Each time all of
my diagnostic tests were normal. Each time I was told that there was NO
reason for my pain. I was advised to go to a mental health clinic for an
evaluation and was sent home with a prescription for Valium. In 1996 I
requested all of my medical records from the Mayo Clinic; and I actually
saw the word "hypochondriac" in the notes of my first visit to the Mayo
Clinic. Basically, I was labeled as having mental health problems...that
there was no reason for my pain...it was "all in my head." I was never
diagnosed by Mayo doctors as having postsurgical adhesions!!
>From the early 1970's and on I continually searched for a clue that would
help to explain why I continued to suffer with chronic pain. In 1996 I even
joined the Endometriosis Association ( EA ); because I found out that was
the only way I could purchase their educational materials. As a member, I
immediately ordered almost all of their books, pamphlets, audio tapes, and
video tapes!! As a result of the EA educational materials, I learned that a
diagnostic laparoscopy is the only way that endometriois can be diagnosed.
I had NEVER been offered a diagnostic laparoscopy; so through the EA I was
given the names of 2 endometriosis specialists from my state.
In 1997 I went to an endometriosis specialist in Minneapolis, MN. We talked together non-stop for 45 minutes; and then he told me that my symptoms sounded more like adhesions than endometriosis. ADHESIONS??? I had never heard of adhesions!!
On August 1, 1997 I had my 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 by the 10th day, I felt the return of the same kind of pain.
When I tried to make another appointment with this gynecologist, I was told that I couldn't make an appointment...that he did not want to see me again!! I couldn't understand why he had dropped me as a patient!! Months later on the Internet I learned that Medicare's low reimbursement schedule for adhesiolysis procedures was the precipitating reason I was being dropped as a patient.
Medicare and my supplemental insurance had paid my gynecologist LESS than one-half of the bill from my gynecologist...and the remaining amount had to be "written off "...meaning my gynecologist could NOT bill me for the remaining balance.
Medicare has rules which supposedly are meant to protect senior citizens. We only had to pay $13; but I was being denied care by the one doctor, who believed me and finally gave me the correct diagnosis for my pain. It had taken me 27 years to find this doctor; and now because Medicare did not pay this doctor fairly, once again I was without a doctor that I could trust!!
Words cannot adequately express the harm that chronic unresolved 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 that postsurgical adhesions must be "the best kept secret" of the medical profession!! No one should have to wait 27 years to learn for the very first time that adhesions have been the cause of their unrelenting chronic pain.!! NO ONE!!!
Since my failed 1997 adhesiolysis, I have done extensive research on everything to do with adhesions. As a result I have been able to learn the names of some surgeons, who are having success with adhesiolysis procedures. Through a friend, who had a successful adhesiolysis, I learned of the name of Harry Reich, MD; and then I learned that he and Jay Redan, MD were going to start an Adhesions Unit at a hospital in Scranton, PA. My friend, Bev, sent my surgical and pathological reports and the video of myAugust 1997 diagnostic laparoscopy to Dr. Redan. Dr. Redan then notified me that an adhesiolysis would be fairly easy for he and Dr. Reich to do. I was very hopeful!!
I was presented with a problem though when I tried to arrange for an appointment. I was told that Drs. Reich and Redan refuse to accept Medicare's reimbursement for adhesiolysis procedures; and since I am a Medicare patient, I could NOT have my surgery at Scranton. Medicare reimburses adhesiolysis procedures to surgeons at one standard fee...without any consideration given to how long the procedure takes ( I know of one that took 10 hours! ) nor any consideration given regarding the skill and experience of the surgeons!
I offered to self-pay so that I could have Dr. Reich and Dr. Redan as my surgeons; but I was told I couldn't self-pay!!!! If I were allowed to do this, the hospital would be subject to a fine by Medicare!!!
I was offered an alternative: Drs. Reich and Redan could perform my surgery at St. Vincent's Hospital in New York!! If I had my surgery in New York, Medicare and my supplemental insurance would pay "something" toward the anesthesiologist and hospital bills ( In 1997 Medicare paid less than half of each bill!! ). 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, as a Medicare patient, cannot do in Pennsylvania, I CAN do in New York??
When I learned that everything else would be much more expensive in New York -- with rooms renting $250 -$300 a day -- I decided I could NOT afford to have surgery in New York!! I decided to go to Germany instead for surgery, where our TOTAL expenses were LESS THAN $7,000!!! This $7,000 included ALL of the following: round-trip airfare for me and my husband, apartment and food for 18 days, hospital room for 8 days, all pre-surgical tests, the initial adhesiolysis procedure followed by a 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, and took a train to Belgium where we spent the weekend at Ghent and Bruges, Belgium )
Something is wrong with the medical system in the United States!!