Name : Dreama Lowry Gibson
Adult: 47 years old
City, State: Burbank, WA
Email : Dreama113@direcway.com
Areas of body affected: Left foot and leg
My foot just started hurting one day in 1983. So bad was the pain that I thought I would go out of my mind. Saw an orthopedic surgeon. He took x-rays and I could hear him in the hall when he put them up say "oh my God". So I went into the hall and said what? He said look at this huge tumor in your foot. It must come out right away. So two days later with two children under two I had foot surgery. When he went in, there was no tumor. There was just a hole where bone once was. He took a little bone marrow (there was hardly any) and sent it to the Air Force Institute Of Pathology. They made the the discovery of this disease. It has been so very hard and I have been everywhere -- no help. Just last week I went to the University Of Washington where there was a doctor who had a man with this disease. Turns out he just wants to watch the progression......
UPDATE REGARDING SUBSEQUENT SURGERY (6/29/2002)
I had my surgery on 6-29-2002. The tumor was behind my left knee and as big as the doctor's fist. It took almost four hours to get it out. I have a 14 inch incision down my leg and behind my knee. From the moment I woke up, I knew it was gone. All the pressure is off my knee and I am beginning to heal. Yes, the pain is bad but every day I am stronger. My doctor is Dr. Conrad, Head of the Bone and Joint Center of the University Hospital in Seattle, Washington. He is a very good doctor and the hospital is also good. He has never seen anything like this and said it was a tough operation. I go back on Friday July 5th to get the findings of the tumor. This was a hard surgery but I would do it again.
UPDATE: July 8, 2002:
I had the stitches removed on 7-5-2002. I am doing very well. I am still in some pain but I am walking very well. My tumor was made of some soft tissue but mostly of bone. I will have new films done in Sept. this year. This will show any permanent damage to the knee. I still have quite a bit of numbness from the knee down to my foot. Doctors are hopeful the feeling will return.
UPDATE: February 28, 2005:
In 2002 I had the tumor of bone behind my left knee removed. I had been in so much pain. The moment I woke up from surgery I felt better. I can now move my knee. I am not without a lot of pain. My doctor for pain is Dr. Wing Chau in Richland, WA. His help with the pain is tremendous. I do not know what I would do without him. Some days the pain is just unbearable.
I would like to invite Dr Chau to the conference and would like more information. The doctor that did my surgery is Dr. Conrad. He is in the Seattle area and now head of the bone and joint center. I am his second patient with this disease.
I am now 50 years old. My first pain was in 1983. Twenty years of this is twenty years too many.
: I am so happy to have found
this site. I have been
dealing with this since 1983. I think sometimes feeling all alone was
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