Jan's question...Has anyone had luck at the Mayo Clinic?

From: Helen Dynda (olddad66@runestone.net)
Fri Jun 29 01:33:38 2001


Jan asked the question: " I am considering a trip to the Mayo Clinic. Has anyone had any luck there? "

There are several messages about the Mayo Clinic in the International Adhesions Society Archives. Scroll down to the bottom of this page; and enter: " Mayo Clinic."

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This is my experience:

My experience with adhesions began as a result of a laparotomy that I had in February 1970. Over a period of 27 years (1971-1998), I sought help six (6) times from doctors at the Mayo Clinic at Rochester, MN.

Between 1971 and 1976, I went to the Mayo Clinic twice. Although I was suffering from very severe pain (1970 and 1976), each time I was diagnosed as having psychoneurosis, given a prescription for Valium, and advised to go to a mental health clinic for an evaluation!!

In 1980 and 1981 I was diagnosed as having chronic functional complaints. This time I was referred to the Mayo Clinic Pain Clinic. I was given four (4) different kinds of nerve blocks -- a different kind of nerve block each day -- and NONE of them were effective; and I was not about to submit to any more painful procedures. At least this time Mayo doctors agreed that I my pain was real -- and my previous diagnosis in the early 1970's ( psychoneurosis ) was not mentioned.

In 1991 I went to the Mayo Clinic for the fifth ( 5th ) time. Very briefly, the doctor who examined me was very nice; but when he had finished his examination, he told me that the head of the gastroenterology department would be in to see me. When his supervisor walked in -- and noticed that all of my diagnostic tests were negative or normal, he proceded to yell at me and accused me of wasting their time! This verbal abuse actually happened!!!

In 1996 I decided to join the Endometriosis Association (EA); because that was the only way I could order their educational materials. I ordered almost everything!! This proved to be money well spent; because I learned that the only way Endometriosis can be diagnosed is via a diagnostic laparoscopy. I had never been offered this procedure!! Through the EA I was able to find an endometriosis specialist in Minneapolis.

I saw him in May 1997and on August 1, 1997 I had a diagnostic laparoscopy -- but the surgeon had to lyse adhesions before he could even enter my abdominal cavity. I had massive adhesions ( This was the first time I had ever heard of adhesions!!), which had attached my omentum to my abdominal wall the full length of my 1970 laparotomy incision and 4 inches across -- as if my omentum had been bonded to my abdominal wall. Ten (10) days later the adhesion pain returned. Fall of 1997 we signed up for the Internet; and I started my research on everything to do with. adhesions.

Now that I had proof that ADHESIONS had been the real cause of the chronic pain I had suffered with for such a long time, in January 1998 I made my sixth ( 6th ) and final appointment at the Mayo Clinic; because I was so sure that Mayo doctors would believe me now -- and would agree to schedule me for an adhesiolysis procedure. The Mayo Clinic is recognized to be one of the best medical centers in the world; and I wanted to have the best surgeons in the world for my surgery. However, that did NOT happen!!

While I was at the Mayo Clinic, I was able to talk to a colon-rectal surgeon, who I knew was familiar with Seprafilm bioresorbable adhesion barrier. He told me that I would have to be having an emergency bowel obstruction before he would consider me as a candidate for surgery. That news was a big let down for me; because if this Mayo surgeon would not do surgery for me, how and where was I going to find a surgeon who could at least match the skill and experience of Mayo surgeons?

Adhesiolysis procedures are very difficult, tedious, time-consuming surgeries for which surgeons are not adequately reimbursed for the amount of time these surgeries can take. At present time there aren't any surgeons -- including the best surgeons in the world -- who can guarantee the results of adhesion surgeries. The human body is in control of the healing process; and, unfortunately, research has not been able to find a barrier that the human body will accept without the development of side-effects.

Ths can be very frustrating for surgeons; and there are many surgeons, who are not willing to accept the challenge of performing a surgery where the success ratio is so very low. Also, no surgeon wants to perform these long difficult surgeries -- only to be poorly paid for their best efforts. No hospitals wants to tie up their operating rooms for the same reason. Consequently, far too many sugeons are closing their patients up too quickly after a surgery -- with the patient being left to suffer the consequences. It is a known fact that any blood left in the abdominal/pelvic cavity will cause even more adhesions to develop!!

Mayo Clinic surgeons are no different. They don't want to deal with the frustration of adhesions and the poor reimbursement they receive from Medicare, HMO's and any other kind of insurance. Since there are NO guarantees regarding the outcome of adhesiolysis procedures, I have to believe that their stance -- in regard to surgery for adhesions -- is all about money.

As far as a medical breakthrough, researchers are trying; but the research dollars are NOT there to make adhesion research a priority. Adhesions are not even recognized as a disease yet!! This is the main reason that Medicare, HMO's and insurance plans do NOT reimburse surgeons, anesthesists and hospitals adequately.

Also, there are far too many doctors who tell their patients that adhesions don't cause pain!! So if diagnostic tests are normal -- and for adhesions they will always be normal -- then doctors tend to cast the blame on their chronic pain patient as if their patient was the cause of their own pain.

I am sorry but I cannot recommend the Mayo Clinic to anyone -- based on the 27 years I sought help at the Mayo Clinic. I never was diagnosed as having adhesions by Mayo Clinic doctors. Instead, they chose to diagnose me as being mentally ill -- an easy cop-out for doctors, when doctors either have no knowledge of adhesions or they won't be truthful and say that they just don't know.

I am glad that you have given me the opportunity to share my experiences at the Mayo Clinic. If you know that the chronic pain of adhesions is your complaint, you will waste your time and your money by going there; and I doubt very much that surgery will be suggested. More than likely you will be referred to a Pain Clinic.


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