did a physical exam and checked me for a hernia. Then sent me for a CT scan and blood tests.
expect pain medication. I told her I just wanted my problems solved. Pain became unbearable so my wife to me to the
emergency room where I was told it was possibly Diverticulits and treated with antibiotics and pain medications.
in lower back. She sent me to physical therapy on my back and told me to follow up with an orthopedic doctor. I stayed on
physical therapy for two weeks with pain only increasing. Note: Scan showed no retroperitoneal mass yet something had
to be there as this is when symptoms began. Could what they thought to be a bulging disk have been the onset of the
RPF? I have since asked three different doctors to look at and compare this scan with recent ones but each said I'll get back to you, and yet they never did saying it was of unimportance.
said he had concerns that my stomach pains and bowel problems could not come from my back. He sent me for an
abdominal ultrasound to check the sciatic nerve.
lower lumbar belt for a while. Note: He was still treating this as a back problem even though he had said my stomach
pains and bowel problems could not have come from my back.
physical exam by the emergency room physician who said my problem was possibly prostate infection. He then prescribed
me Cipro and told me to see a urologist. I was given an appointment to see him in two weeks.
again given the same physical exam by the same e. r. physician and told it was still possibly prostate infection and that the
Cipro needed time to work.
pain in my testicles and penis. After examination the doctor said that he could not feel what the e. r. doctor had felt but that
they must know what they diagnosed and kept me on Cipro. He also stated that he did not think the back and bowel
problems could be associated with prostate infection and that I should see the orthopedic physician again. Note: He did not
agree with the previous diagnosis of prostate infection yet did not check into it any further or suggest any other
possibilities. Being a urologist and my final diagnosis being considered a urological disorder, this urologist should
have known the symptoms. He should have checked other possibilities rather than settling for the e. r. doctor's
diagnosis that he didn't fully agree with in the first place.
back problem even though he clearly said he did not feel my symptoms were coming from my back.
follow up.
first injection was so high on my back as my pain was much lower. He said he had been misinformed by the
orthopedic doctor as to the location of my pain.
and swollen testicle. CT scan was done and mass was found but at this time they thought it was an aortic bleed. Was
admitted to the hospital and a second CT scan was done the next morning to see if there were any changes in the mass which
helped them determine it was a solid mass. Colonoscopy done to determine why there was blood in stools. I was told a
doctor would be in soon to discuss the results with me but did not see a physician again during my stay. When this was
mentioned to the nurse upon my dismissal she said that the results came back okay and I was then told to follow up with the
emergency room physician who said that there was no way this could have been missed on the first CT scan done a year ago
by my family physician. The cardiologist who had been called in to help determine as to whether or not this was an aortic
bleed, had left for a two week vacation the day before my dismissal but I was not told of this even when I asked about my
test results, nor was I recommended to another cardiologist while he was gone. I found this out only by calling his office in
reference to a note left with my pharmacist which stated I needed to contact my family doctor for refills if needed.
probably prostitis and was something I was going to have to live with and ordered an ultrasound for the testicle. Ultrasound
came back okay showing only clear fluid in testicle.
had, I decided to send a fax to all three doctors...urologist, cardiologist, and the emergency room physician.
prescribed me Prednisone and told me "I'll call you back", but as before, he never did. When I was finally able to reach him
again he said he was going to research it (the possibility of RPF and I was told that another CT scan would be needed to see
if the Prednisone was working to stop the growth of the mass but one was not scheduled until I finally took it upon myself and
called the nurse myself and insisted they schedule it.
fax saying she did not fully understand the situation or the seriousness of it. That's when she told him that this is exactly what
needs to be explained to us. That we have repeatedly asked questions and gotten no answers. He then pressed harder and
harder on my back causing redness and pain. Then recommended physical therapy saying nerves in the back can cause
abdominal pain contradicting everything he had told us about Retroperitoneal Fibrosis, the seriousness of it, and how
it was most likely what had been causing all the symptoms. I went there because of the pain but was given no pain
medications. My wife had asked about blood test results and he said he'd go check on them and get back to us but he never
did. An x-ray was also taken but again we were not told the results or even why it was being done in the first place. The
nurse, hearing all the conversations and knowing of the situation suggested we go elsewhere and find another physician.
not get at the emergency room. He then ordered a needle biopsy. During this biopsy I experienced the same pains in exactly
the same locations as I had told doctors and let them know this. Results of the biopsy showed Retroperitoneal Fibrosis
around the aorta. Please note that a needle biopsy, even though the results may come back stating that there were no
cancerous cells, this does not rule out cancer. With RPF to completely rule out cancer it requires a larger piece of the
growth to get an exact diagnosis as to malignancy inside the mass. I was kept on Prednisone and pain meds. He
explained that he knew very little of this condition but would do what he could. Unfortunately he never made any attempts to
learn about what we were dealing with or even help us to find a physician who could help.
numerous physicians I was finally given the name of one at a University hospital who had diagnosed and treated
retroperitoneal fibrosis in his many years as a urologist. During our first phone conversation he immediately told me that all the
symptoms I'd been having were signs of Retroperitoneal Fibrosis. He scheduled an open biopsy to determine malignancy and
I was given a definite diagnosis of non-cancerous RPF.
that in all his years as a surgeon, and of the RPF biopsies he had done, he had never seen anything like this. The mass was
made up mostly of blood vessels and nerves entangled in fibroid tissue. What started out to be a simple biopsy, ended up in a
battle to save me from bleeding to death. Because of this, attempting to remove the growth is out of the question. I am
currently on Prednisone, Tamoxifen, and pain medications as a course of treatment to hopefully slow the growth of the mass
and ease my pain. It has been recommended that I have a CT scan and blood work every six months to monitor the
progression and medications.
proper diagnosis. October 2003: finally found a doctor willing to look at and discuss the first ct scan which we were told
was normal ....not only was the mass clearly present, but in he ten months it took to get a diagnosis it had grown
considerably. Had it been diagnosed with that first scan and treated promptly the mass could have been stabilized and my
symptoms would not have progressed.
that time till my most recent scan in August of 2004 the growth of the mass has stopped.