Understanding through knowledge
Knowledge through understanding
Research
We are not scientists but we have acromegaly so who is better to study the effects of this incidious condition.
Drugs
If you have been diagnosed with Acromegaly then drugs will have become a part of your every day life....
Treatments
The surgical removal of the tumour is normaly the first line of attack, followed by radiotherapy....
Related Conditions
In addition to the general malaise associated with Acromegaly, there are a number of related conditions..
Acromegaly Research |
  
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I'm certainly no scientist but, I mean, who better? I wake up every morning stuck inside a prime specimen. I take the drugs every day and I've had all of the surgical stuff.
I'm not going to experiment on myself - that would be foolish Egor! But I can study the effects of drugs in my everyday life, even if that is nothing more than a journal. I'm hoping this will be more than that though and I'm also hoping that this area can be used to inform on studies and research in the real world. The new Gamma Knife technology and the apparent isolation of an Acromegaly gene, for example, are major breakthroughs for both surgery and science. (see below)
Discovery of mutation in AIP gene associated with acromegaly
24. August 2009 00:19Information could lead to better screening of deadly pituitary disease difficult to detect in early stages
An indigenous family living in a mountainous area of Malaysian Borneo helped Van Andel Research Institute (VARI) researchers to discover information about genetic mutations associated with acromegaly, a form of gigantism that often results in enlarged hands, feet, and facial features.
The information could lead to better screening for the disease, which most often results from a benign pituitary gland tumor that can be deadly if left untreated, but which is difficult to detect until later stages when features become pronounced.
Researchers located a 31-member aboriginal family that included individuals with acromegaly living in a mountainous region of Borneo, Malaysia when the effects of the family patriarch's growing pituitary tumor necessitated medical treatment. A medical team including VARI Distinguished Scientific Investigator Bin Tean Teh, M.D., Ph.D., and staff from the Department of Medicine at the University of Malaya Medical Centre and the Department of Medicine at the Queen Elizabeth Hospital in Malaysia subsequently traveled to the family's village several times to collect blood samples for testing.
"Researchers had recently found a mutation in the AIP gene associated with acromegaly," said Dr. Teh, "but we found that several family members who didn't have visible symptoms of acromegaly had this mutation as well. This increases the importance of screening for families with cases of acromegaly since anyone could be a carrier. On one side of the family, at least two generations carried the gene before someone showed any symptoms."
The later stages of acromegaly often produce enlarged hands and feet, protruding brows and lower jaws, thick voice and slowed speech from swelling of vocal cords, and other symptoms. When diagnosed, the tumor and entire pituitary gland are usually removed, followed by hormone therapy for the rest of the patient's life. However, because the progression of the disease is so gradual, it is difficult to detect. If left unchecked, patients can die from complications such as heart or kidney failure. Well-known acromegalics include wrestler-actor Andr- the Giant and motivational speaker Tony Robbins.
VARI Research Scientist and lead author of the study Sok Kean Khoo, Ph.D., led researchers in scanning DNA in the family's blood to find other factors that might explain why only some family members with the genetic mutation had visible symptoms of the disease. They found regions on a few chromosomes that might lead to further insight; these findings were published this week in the journal Endocrine-Related Cancer.
The prevalence of acromegaly is approximately 4,676 cases per million population, and the incidence is approximately 117 new cases per million per year. However, Dr. Khoo said that the recent findings may mean that the prevalence is higher since carriers of the genetic mutation who do not have symptoms are not included.
"The sooner we know how and why people are affected differently by this disease, the sooner we can help families who have it," said Dr. Teh. "One of the women in this family was only 19 and probably thought that since her grandfather had lived so long with the disease, she would too. She chose not to go to the hospital for treatment and, sadly, died two years after our last visit."
Source: Van Andel Research Institute
Patient Success Stories
High Tech, Low Pain: A Gamma Knife Patient's Story
By Noël Holton
University of Maryland Medical System Web Site Writer
Looking at the hulking, metal, helmet-like devices that Gamma Knife patients must wear, it's hard to believe that most of them describe the procedure as "virtually painless". But they do.
"I didn't feel any pain at all," said Jerry Middleton, who had Gamma Knife surgery at the University of Maryland Gamma Knife Center to treat a pituitary tumor. "I had a bit of a headache when it was over because you can feel a little pressure where they attach the helmet, but that was it."
Middleton, who traveled from Long Neck, Delaware for the procedure, said that his Gamma Knife procedure was much less traumatic and invasive than the 10-hour surgery he underwent last November for his tumor.
"They didn't have to shave my head or anything this time," he said. "Before, they had to drill up through the roof of my mouth and into my brain to get to the tumor. But this Gamma Knife is really easy. The actual treatments only took about 20 minutes altogether. I got two doses of radiation that lasted about eight minutes each."
Unlike traditional surgery or conventional radiation therapy, there is no recovery period with Gamma Knife. Once the surgery is over, patients can generally get right back to their lives.
"We've had patients leave the hospital and go to work the next day," said neurosurgeon Lawrence Chin, M.D., medical director of the University of Maryland Gamma Knife Center.
A couple of hours after receiving his Gamma Knife treatments, Middleton described the procedure matter-of-factly while recuperating in his hospital room.
"The first thing they do is give you an MRI," he said. "They give you the dye so that they can take a look at the tumor and see the area where you'll need radiation. Then, they make a frame for your head, and coordinate where to put the holes on your helmet. They have four different helmets with four different holes, and they use the holes to secure your head so that it won't move around at all during the treatments."
Chin said that once all of the information about a patient's tumor has been collected, it is entered into a computer. The computer then figures out how many treatments the patient will need, and the appropriate dose of radiation for each treatment.
"They had me lie on my stomach as they fitted me into the Gamma Knife helmet," Middleton said. "Before they fasten you into the helmet, they numb your head so that you won't feel anything. Then, they put me into the machine. The treatments didn't hurt at all. You don't have to close your eyes or anything. You can bring your own music on CD to listen to while you are inside the machine. I forgot to bring my own, so they played some country music for me. It really went by very quickly."
Once it was all over, Middleton said he felt fine.
"I'm not planning on going back to work tomorrow," he said, "but I do plan on going back in a few days."
Source: University of Maryland Medical Centre
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