Friday, April 10, 2009

New news...

I found out something new. After my pituitary surgery, my pathology never said that they tried to stain for ACTH. I finally got around to calling them and asking them to stain it for ACTH. They should do that automatically. One of the resident doctors at my surgeon's office was in shock that they never stained it. When I told him, he had it pulled right away and had it stained.

Well, it stained positive. I knew it would, given my high IPSS results. BUT... here's the kicker. My surgeon had said in my report that he first went in the left side since my MRI showed what he thought was tumor on the left. My IPSS said on the right. He didn't find anything abnormal on the left, but he took a sample and sent it to pathology. They said it was normal (but now I know they didn't use ACTH to stain it!). Then, he went in the right side, and didn't see anything at first, but kept exploring, and found it on the posterior of the gland. He removed all of that and sent it on a slide. Now that they have stained them, BOTH slides stained positive for ACTH. That tells me I have HYPERPLASIA! There is nothing on the report that says hyperplasia, but I'm smart enough to figure that out, given the detail of my surgeon's report. He described where he took the tissue from, and what it looked like (normal, abnormal, white, tan, pink, etc.).

That makes me feel better about the BLA. I've known that is what I need. I've been tempted at times to go for the second pituitary surgery, just to get relief, but in my heart of hearts, I knew it wouldn't work. Now I REALLY know it wouldn't work. When you have hyperplasia, that means the bad cells are spread out, through out the gland, and you would never get all of them. They are basically sitting there waiting to become a tumor. I'm glad I held out for the BLA. Now, I just need to get the clearance. I think I'm close. I hope and pray it's soon! I'm so tired of dealing with all of this.

The Keto has been helping, but I'm still cycling. It doesn't stop that. That means sometimes it works really good, and sometimes it doesn't. Sometimes, I dip too low naturally, and I have to quit taking it for a bit. It's still a balancing act, but it does make me feel better than I feel without it! Most of the time, I never am low enough to even take the hydro with it. I has helped me lose 8 lbs and 8.5 inches, so I know it's working. I do bounce up in down in weight though, because I'm still cycling.

I'm hoping my next post will say, "CLEARED FOR SURGERY! YAY".


judycolby said...

That is good news, Gracie.
I also hope that you are cleared soon and can get surgery behind you.

KW said...

Hi Gracie,

I've been following your blog over the past couple of months and I'm so sorry to hear about your latest medical woes. It just never seems to end, huh?

I hope things go well with your surgery! In the mean time, I recently started a group that you might be interested in. It's call the Cushing's Partner Program, a place where patients can partner up with survivors of Cushing's to gain an inside perspective on the recovery journey from Cushing's. To learn more or to join our group, please follow this link:

Keep up the blogging and I hope to see you in our group!

Take care,

Christina said...

Keeping fingers and toes crossed for you. I hope you are cleared soon and that you can get back to the healthy side of life!

Lisa - Cruise Specialist said...

Very interesting Gracie. Good that you are on top of things -we have to be our own advocate these days, especially with this disease.
Dr. MCC mentioned hyperplasia on my MRI too..UGH! I'm glad you have more peace of mind about the BLA. Hopefully it will be the fastest way to get you cured and on with your life. Take Care!