Post Pituitary Surgery-How did you feel?

[syfy]

I am new to this, but here it goes...I am 32 years old and  I just had a pituitary tumor removed 3 weeks ago. I have been trying to find out how people felt after the surgery. I of course have headaches, and dizziness. But it actually feels like my head is clearer...before my surgery I couldnt seem to form a thought, I was so weak. I still have weakness but not as bad. My eyes used to hurt, and very hard to focus. I didnt have the best experience after the surgery, they didnt even give me discharge instructions. During my follow up with the O.R. nurse she finally told me that I cant sniff, blow my nose, try not to sneeze and dont hold my head down. She said for at least 2 to 3 months!! Is that for real???? I am on hydrocortisone 3 times a day, and before the surgery i was diagnosed with hypersomnia, because i couldnt seem to stay awake. I would wake up, and about 1 to 2 hours later I will fall asleep. I had to stop driving because i would fall asleep. I am more alert now, but how long will it take to start feeling normal again??? Will I ever feel normal again???

[rumpled]

It can get better - but I can tell you that most of us hope for sudden changes after surgery but most of us find that the changes are as gradual for the better much like we noticed the changes for the worse.

So the fog will lift - but the degree is unknown.

[yoyomomina]

The brain fog is AWFUL. I actually started dealing with brain fog when i contacted Mono when I was 16. I would deal with it periodically throughout my life. I lost a couple of jobs because of it - I would stay out of work for long periods of time because I couldn't think straight - my reflexes were slow so I was afraid to drive - I had no idea what it was - my doctor was not any help, he would put me on antibiotics and send me on my way. And this is how it went for years & years until I thought I had Chronic Fatigue Syndrome. I diagnosed myself because of symptoms.  That  was when I started pushing through the episodes. I learned how to live my life  &  live with the symptoms. A few year back I was tested for sleep apnea & discovered I have severe obstuctive sleep apnea.  The brain fog seemed to stop happening for a time. I had to havesurgery a few years back & because of the anesthsia (I think) after surgergy  I was in a brain fog for a whole year (a very difficult year for me).  Then it was discovered in during that year that I may have Acromegaly. I waited almost a whole year before getting it checked out - why I don't know - stubborn I guess.  I finally went to the endo & it was confirmed - yes, I have Acromegaly.  I was so happy I had an answer. FINALLY!!!  I thought my brain fog would be no more - HA! A week before my surgery the brain fog visited me and decided to stay I guess. And it's worse than ever - fun for me! Then I read about all the other issues with this illness & I thought I was cured. HA again. God help me!! And He has & does - I could not have gotten this far without Him. He is my Help & Comforter & the  Glory & Lifter of my head. To God be the glory!

[rumpled]

I have it restricted to friends - I just added you.
I did not have acromegaly. I had prolactinoma and Cushing's disease. I have met several people dealing with acromegaly though and they seem to have a lot of the same issues - with a few differences thrown in but I don't keep in touch with them.

The brain fog though is typical of pit peeps.

[yoyomomina]

I know I need to learn as much as I can about life wtih acromegaly and I certainly want the truth.  It's just hard dealing with things when I'm in this brain fog and I'm so exhausted.  You've had a lot you've had to deal with - much more than me - so I really should keep my whining and belly aching to a minimum.

I looked on your profile page but didn't see any pictures of you.  My brain probably wasn't computing at that time - I will look again.

I really appreciate all that you have shared Rumpled - the more you share the better for those of us who want to know everything and are knew to this.  So my question is do you have Acromegaly or was that not one of the illnesses you've had to deal with?

[rumpled]

I wish you had started a new thread... this one is a hodge podge of different people's stories.

I had Cushing's myself. The FDA has recently approved a couple of medications for Cushing's however they are not great for women unless they are post-menopausal or have had children since they greatly effect estrogen.

Surgery was the only option before and I had it. Your neuro-endo has to evaluate if you are a candidate for one of the medications, or even a short term course of ketoconizole which has side effects as well.

Cushing's has to be treated - it cannot be left alone as it is a destructive disease. The destruction may or may not be evident, but it is there is most people but the degree can vary depending on length of disease. Test levels is not an indicator. I suggest you find a very very experienced surgeon as the tumors for Cushing's are very difficult to remove as they are typically softer than most other types. In any case, experience is always needed to have the best outcome no matter the type.

[missbeth1990]

Hi, I am 22 and just Cushing's syndrome cause by a tumor on my pituitary gland. I am trying to decide if surgery is worth it. Any thought?