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???

[smsk]

I had my huge macroadenoma (pituitary tumor) two days ago, spent only one day at the hospital, and the surgery has been a success (all of the tumor was removed).

Prior to my surgery I, too, gained 50 pounds. I notice I've completely lost my apetite, but that is probably because my nose is still packed with filling material from the surgery and I can't smell anything, thus food is tasteless.

I'm feeling pretty well considering this has been a major surgery. The only side effects are extreme thirst and peeing (temporary diabetes insipidus, it is getting better now), nasal congestion, and some random headaches (I'm taking fiorecet for that).

I had a tumor the size of a small a third eye in the back of my nose. Pretty bad, yet I was standing the next day, texting, reading websites in less than 24 hs. I was lucky to be in the 95% with no major complications. I just hope that my hormone levels get back to normal too, so I can shed weight (I'm 150 pounds now) and my amenorrhea is fixed up.

Hope that my testimony is useful, good luck everyone!

[rumpled]

This is an old thread with stories from many people - which makes it ever so confusing.

It helps, in future, to start a thread (a new post) that is all about you.

If I had to guess, it sounds like you had Cushing's. I had that as well. If so (and please find out as it could be acromegaly or another tumor. So it really helps to know all the details on  your tumor.

If you do exercise, you can do damage as the cortisol can effect muscle and bone. Other hormones can also have long lasting effects. Once the tumor is removed, your body will slowly return to normal - but it may be a new normal. Some do drop all the weight, some don't. It has only been 3 days - there is surgical recovery and hormonal recovery. Be patient with yourself. You cannot exercise now anyway until you recover surgically, then you have to know what the hormones have done, and replacements etc.

[LucyEvony]

I had my Pit gland removed 3 months ago today.
I was in hospital 11 days and still cannot do much exercise at all.
Ive lost 5 kg since the op...no diet no exercise.

But i have had trouble with eating. I barely eat a few mouthfuls and im full, cant eat any more.I would be lucky to eat 1/4 of what i used to.

[StNik]

I had a pit gland tumor removed 3 days ago. I was not put on any meds besides saline spray & pain pills when discharged. I too gained LOTS of weight from the tumor, 60 pounds. Did you have to exercise excessively, day & night to lose weight or did it decrease on its own since the tumor was gone ?

[firework691]

Hi,my names Ella, I live in the UK. I had surgery to remove a non secreting tumour 19 months ago. It was 9mm when they operated but it turns out they only took the coating out-there was a cyst inside. Now I have a 5mm cyst in my Pituitary Gland. My surgeon didn't take a tissue sample but thinks its a Rathes Cleft Cyst. I have numbness in my 4 front teeth and upper mouth from the lip incision and still experience soreness in my sinuses. I have regular MRI's but my 12 yr old son has Friedreichs Ataxia and is unable to walk,feed himself or bath himself and Im worried that surgery may be needed again in the future-has anyone else had partial surgery or the cyst left in?

[MichelleNow]

I had 2 Pituitary Surgeries and my BLA (Bilateral Adrenalectomy) At UAB. Dr Riley is my Neuro there and she is awsome! And Dr Porterfeild is who did my BLA. I was in remission for 6 years after my first Pit surgery and in 2011, I had a reoccurance, Pit source, even though my pit was removed totally in the first surgery. the 2nd surgery was unsuccessful of removing any residual cells, they were most likely in the carnivorous sinus. In July of this year, I had a BLA, my levels are good and I am dropping weight. before my forst surgery I was 320 and went down to 160, had tummy tuck and breast reduction. I am now 210, only got to 231 this time but still a huge gain. I hope you like UAB, they are AWESOME!!