Hi Folks!
How many of you read the Acromegaly News over in the sidebar? I take a look at it from time to time, and I found one of the current articles up there to be particularly exciting - It talks about the the Kanzius Method of treating pediatric brain cancer, which may be one day applied to pituitary tumors! Very interesting idea, and I hope there is funding and support for more research! Here's the article in the news bar:
http://www.news-press.com/article/20090319/OPINION/903190319/1015
It seems the person who invented this method passed away recently (John Kanzius, R. I. P.) but his legacy is quite profund. I read his obituary and discovered that he is quite a remarkable person- he seems quite brilliant and accomplished despite never earning a college degree. I encourage you to take a look at his obituary for yourself!
Anyway, the message of this post is to remind people that there is progress in the treatment of acromegaly!
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7 comments:
Wow...that's so fantastic. I really hope it works. Sign me up! :-D
Hello, I have been researching acromegaly and was fortunate to come across this blog. I am fairly certain my mother has acromegaly and I am very worried that because of her age and lateness in responding to this condition that she may die from this. She is getting an MRI done tomorrow. I know her doctor took her blood pressure recently and it was high. She is 57 years old and has had symptoms of acromegaly, increased hand and feet size, husky voice, sleep apnea, arthritis in knees for at least 10 years or so. I knew something didn’t seem right, but she always brushed it off. I am 23 years old and I get worried when my mother has a cold and now I am not too sure how to feel. I am trying to stay strong for my mom and not get too worked up till we get more information from the MRI. I know this is probably too difficult to answer with the lack of information given, but I was wondering if the success rate will still be high given my mother’s situation?? I appreciate any input or thoughts. Thank you so much. And I am so grateful for sites like this that come from real people because after looking over some of the medical sites just leave me more confused or worried.
Hi Jeanette,
The diagnosis of acromegaly is not usually a death sentence, but I understand your concerns. Many of the symptoms of this disease are treatable, and it is my understanding that most people can live a normal life even after the diagnosis. I don't mean to say there are not struggles. It depends on how much the excess growth hormone or pituitary tumor has affected a person.
I would wait for the MRI results and then see what the doctor has to say about her condition. Hopefully he/she can ease your fears a bit.
Hi Jeanette,
Alecia is totally right. We are all examples of people LIVING our lives with acromegaly.
As for "success rate," I think you'll have to wait and see the results from the MRI, as the likelyhood of "cure" from surgery is dependent on the size of the tumor. I assume she is also getting a blood test for hormone levels? Success with controlling GH levels with medication depends on the medication and dosage, and that would be up to a doctor to decide what is the best option (sometimes it takes several adjustments).
I hope the MRI brings you some good news. I'll be thinking of you and your family. Please keep us posted with more info! Just curious, how was your mother finally diagnosed?
-Ellen
Jeanette,
My heart goes out to you because I have had the same "woulda, coulda, shoulda" moments, and sometimes I get stuck thinking about all the missed opportunities for diagnosis. It's easy to fixate on things like that.
Coming to terms with acromegaly is a long process, for both the patient and loved ones. I'm glad you are facing it head on and expressing your feelings. This is a great place to unload! Everyone here understands. Do you want to join as an author? Just email me (I have contact info on my blog) and I'll get you set up.
-Ellen
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