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Want to connect with other Cushing's disease Patients
Diabetes & Endocrine System | Last Active: Jul 16 1:22pm | Replies (29)Comment receiving replies
@gretchenmpls
It’s good to hear that your surgery was successful.
My daughter also had a pituitary adenoma and had surgery 2010 at age 27. Surgery was successful.
You are right about postop treatment- we were not adequately prepared for the tapering of the hydrocortisone. We had to make several phone calls in the beginning to make sure we did it right.
We were also disappointed at how little information about life after Cushing’s was given. I know everyone is different. My daughter was very ill when she finally was diagnosed. She had a rough time and could not return to normal life for quite a while. The endocrinologist would not extend her time on disability.
There is a Cushing’s group on Facebook.
Cushing’s education should actually be extended to include physicians. Most doctors have never seen a patient with Cushing’s.
The surgeon asked my daughter for copies of photos of herself at different ages that she brought along. He planned to use them when he was giving lectures. He could see early signs of Cushing’s at a young age when she was thin.
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Hello @astaingegerdm thank you for your response! I'm sorry I missed this until now. I know what your daughter went through. My physician gave me only 2 weeks worth of steroids. I didn't even know of a potential 6 month taper period. It was hell on earth. Three years later I'm still dealing with medical mysteries of other symptoms that have occurred due to the destruction of having had Cushing's.
There are multiple Cushing's groups on Facebook, some are "better" than others. It's important that information is accessible, yet free from misinformation. I have joined one that seems appropriate and have not only checked in with others, but offered guidance based on my knowledge after having joined the Cushing's Support and Research Foundation. I personally am working hard on trying to educate physicians even through my own medical troubleshooting. Hosting education days are one way we can reach physicians. Our Foundation also conducted a global survey on the Quality of Life of a Cushing's Patient to which we are beginning to share those findings on our Instagram and FB pages. We will be creating abstracts to share at medical conferences.
I hope your daughter is doing better! I agree, we don't get back to normal. We find a new normal and slowly find all the positive changes that occurred with us to start a new chapter.