Manual Segmenter Dicom Viewer (13. 3. 2018)
Brief zur Vorstellung der Person bei der
Ollier-Maffucci-Selbsthilfe-GruppeAbgedruckt im Newsletter 1/2003 in http://www.ollier-maffucci.org
Dear ladies and gentleman
Dear Hermann SchmidThank you for the kind answer to my registration form mail. Because there was not enough place to write what I wanted, I enounced a larger email. Here it is:
Four years after my birth on January 6, 1957, my parents noticed a difference in the length of my arms. Dr. med. Jost Zemp, a surgeon in Lucerne, Switzerland, diagnosed the disease as enchondromatosis. It was in my right hand, right forearm, right upper arm, right shoulder, right rib, right hip, and, as an exception, also in my left shoulder and left upper arm. The right upper and lower arms are about 20% shorter than normal for my size; the left upper arm is also about 20% shorter. Hence, my right arm is shorter than the left. From 1962 to 1972, all mentioned parts of my body underwent some surgical procedure to rectify what could be rectified. But until a few years ago I probably never heard the names of Morbus Ollier or Maffucci.
When I was nineteen, Dr. Zemp attempted to operate on my left shoulder, "just as a beauty correction". However, due to the instability of the bones he had to halt the surgery.
All my further life went pretty well. I studied philosophy, music and sociology, and I even played the Indian sitar for six years. There were only three small disturbances: 1965 the left upper arm was broken, 1971 the same happened again and 1985 for a third time. You can still find the nails used in the last two surgeries at: www.ueliraz.ch/biographie Towards the end of 1999, the enchondromatosis began to show its teeth. There was pain in the left shoulder, more or less constantly day and night. I fought it first with physical exercises for about half a year, and tested several ointments afterwards. All the time, I thought it would be a kind of arthritis, combined with an enlargement of the tumor in the left shoulder or the left upper arm. Since my doctor had already retired, I didn't know to whom I could turn for a thorough examination of my shoulder.
Though the pain was not too severe, I just could not stand it any longer, and after January 2002, I felt extremely uncomfortable. At the end of April, I finally visited a surgeon. He didn't talk much about chondromas but told me that it would be a cancerous tumor that is probably growing. He didn't lose any time making an appointment for me at the University Hospital of Berne, called the "Insel" (island).
There I was subjected to such diagnostic techniques as: x-rays, magnetic resonance imaging (MRI), computer-tomography, and skeleton szintigraphy. After all that, the team of physicians still could not decide if the tumor must be removed or if it could remain in the arm. No metastases were found.
Shortly later, Professor Ralph Hertel M.D., a specialist for shoulder, elbow and tumor surgery, proposed to use a new technique, Positron Emission Tomography. PET had been used in Berne only for little more than a year and the Swiss health insurance system hesitates to finance it. The reason for this is that they are not convinced that PET is safe. The result was that the chondromic parts of the body are benign - except the big one in the left shoulder. On June 19, a small operation was made to test the material of the tumor: could be made a chemotherapy or an X-ray-treatment? As the answer for both was no, the only solution was the total extraction of all the tumorous material in the left shoulder and the left upper arm.
You can imagine how I felt when Dr. Hertel explained the surgery to me over the phone! Only a small part of the humerus bone near the elbow was to remain, all the rest up to the shoulder, and even a part of it (towards the neck), was to be removed. In its place, the fibula of my left leg was to be split, and the two parts were to be implanted in place of the missing humerus bone.
The surgery took place on July 17, 2002. It took eight hours. All members of the surgical team did a fantastic job. What resulted must be called a masterpiece. You can study the inverted x-ray image at: www.ueliraz.ch/biographie/shoulder.htm .
After this massive surgery I never suffered any pain. I can walk and even hike in the mountains, just as before.
The point that I am trying to make is that in rare cases a chondroma, a benign tumor, may become a chondrosarcoma, a malignant tumor. However, this unpredictable process can now be diagnosed with PET, and modern surgery is able to extract tumors from almost anywhere in the human body.
Humankind, however, can benefit from state-of-the-art science and technology, such as provided by PET, only when it is available to everyone. The chance to use the PET must be given all over the world as the political demand must be constant and regular, that the high-tech medicine which helps us so wonderfully must be available for anyone anywhere.
Ueli Raz
Bern, 10/17/2002