casperslove

Finally!! I've been fighting with my local EMS to carry it for a while now! Had no idea there was a waiver & it got passed! Awesome!! Thanks Mary!!

I took one of my kids to the ER in the spring & we both had a face mask on so as not to get sick from the flu going around. Well the nurse said she understood why my kid had one on but why me? I told her I had Addison's & did not want to get sick. She was like "what's that?" I have done everything possible not to have AI cuz I think this hospital would kill me!!

More questions if you don't mind.

 

I have been having problems with memory issues especially names and how to get to places in the last two years. This is particularly bothersome because I used to do public speaking as a motivational speaker. I'm not sure I could do it now. Does this improve post surgery? I hope so, I want to teach people about this disease and help others.

I didn't have problems with my memory too much before surgery, but I've found I struggle post op. Names & numbers don't stick. I went back to college to learn photography & I learned I need to do & not just hear things to learn.

 

 

I also was diagnosed with glaucoma this summer. The vision test showed diminished peripheral vision. Can that be reversed or not? Assuming that is due to the pituitary tumor, will that make the surgery more risky / difficult?

Hmmm not sure on this one myself. If it is due to the Cushings, it should fix itself.

 

It seems that many people who have pituitary tumors have multiple surgeries and eventually have BLA. Is this due to new tumors on the pituitary gland and adrenal glands or have the adrenal glands been so damaged from years of too much cortisol that they aren't able to recover?

Usually the tumors are still there. The tumors either grow back or the surgeon just didn't get it all. That's why you need a good surgeon. After surgery the doctors wait to see if you "crash." That means they want to see your cortisol levels go as close to 0 as possible. How your body handles weaning cold turkey basically. My first surgery, I didn't crash. My second surgery, I got below 0 before they gave me steroids to compensate & wean down manually. For some people, they have tumors on both the pituitary & adrenals. They only realize it after the pit tumors are out.

That is quite a good sized tumor. Mine was only 2-3mm.

 

But Melly's right. Being cyclical vs florid makes a big difference. Majority on this board are cyclical, so that's why more surgeries are needed. I had 2 pit surgeries & have been in remission for over 4 1/2 yrs now. I hesitate to say the "c" word as I don't want to jinx it.

 

Having an experienced surgeon who knows what he's looking for & how to remove the tumor just so, is very important. Make sure you find out how many he's done. A handful just won't cut it. (Literally & figuratively.)

Prolonged exposure to very high levels of cortisol (such as due to Cushing's syndrome) can result in weight gain.

 

But honestly when you get a doctor that doesn't even want to do research to understand, it's time to move on. Many of us have been from doctor to doctor to doctor to find one that will listen. I hope you can move on to find someone who will help you.

I don't have any direct link as my father never went to Vietnam, but my uncle did. He had developed all sorts of problems & in the end died of non hodgkins lymphoma. The doctors said it was all from his exposure to agent orange. He had no kids tho because of the fear he would pass something horrible on.

Yay! Congrats!!!

Kay, New Jersey, 1st & 2nd pit surgery June 2008 - in remission