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]

I am sorry for what you are going through. It always seems very scary in the beginning - but you are not alone.  You also have to realize that the people that are posting on the internet are not indicative of the whole population - they are seeking more help so it can be skewed a bit more to the scary stories. There are people out there that manage on their meds with a prolactinoma and do quite well.

That being said, I hope you are being treated at a pituitary center. For a 1mm tumor, it sounds like it must have been a dynamic pituitary MRI? Smaller tumors and heck even some larger ones won't wrap around an artery. They can grow  up and grow down - but most of them really don't get big enough to do that. Mine (both of them) were around for over 12 years and neither got very big. So it really just depends. I had the surgery and I know many people that had it - it is an anatomy issue as well as a surgical skill issue in whether you get a leak - so they are not common. So while I understand the fear after what you read, I can tell you in reality, it does not happen often. I had the surgery and I must say if you use a super skilled surgeon, it is not bad - I have had 12 surgeries and it was among my easiest. Hormonal recovery was not fun or easy - but the surgical side was not bad at all.

There are other medications to try - parlodel - as well you can try different dosing regimens - more often with less dose etc. nights with food - talk to your pharmacist.

Most prolactin tumors are treated with meds - as long as it responds, you won't have to worry about surgery. But you have to stay on the meds forever for the most part. I would appreciate though if you would start a new post for questions. This is a long thread with so many stories in it - very confusing to find things.

[k229]

i have microadenoma. i am 30 yr old female. i have been on dostinex for going on 3 months. doctor said it would be ok to take half of a .50mg pill for the last few weeks because of side effects. then bloodwork got done this past week and my prolactin level is now a 1.8 it should be a 4.8 and no lower. so now i have to take the whole pill once a week( half a pill twice a week). i am ok with dealing with the side effects if i dont have to have the surgery. heck i will take whatever the doctor says to just so i dont have to have the surgery. after reading up on it and also seeing peoples post surgery comments. i dont like surprises so i looked it up on the internet and i am scared to have it done. i know it can grow and wrap around my artery and do damage but i dont know if i can handle the damage it may do to have the surgery. i am married and have a 7 yr old son to think about. my son doesnt even know what i am going thru and wont unless in a couple months i am told the surgery is what has to be done. i had hormone tests done while on birth control and my levels were really low. so i got off the birth control and 3 months later my levels were better but my prolactin level wasnt. so i switched to a better doctor and he did an MRI and found the tumor. it is less than 1mm when that MRI was done. i just want this over with and i am praying the dostinex takes it away cause 6 months is coming up fast and when it is up I will have another MRI and if it isnt gone I am gonna have to have the surgery. i am happy to have found your comments so i know what i am getting into. but I have had meningitis at age two(which i dont remember but mom said it was horrible cause i almost died) and i dont want to have a leak post op and open myself up to meningitis again. there are risks with every surgery i know but i am not ready to take those risks. i hope my doctor being optimistic about me not having surgery is true .

[missbeth1990]

I live in Alabama, close to Birmingham. The hospital is UAB.

[yoyomomina]

That must make you feel very  good.  Where do you live? Experience professionals are definitely a plus!

[missbeth1990]

I just found out that I have one of the nations best pituitary clinics within 45 mins of my home. I will be going to see them soon. Knowing that there is a clinic that close, and that has a lot of experience with this type of problem, makes me feel considerably more at ease.

[yoyomomina]

As I said my patience is not on a high level.  Do you know if there is any way to reverse these posts - as in most recent first?  BTW, I am so glad I found this site.  It's comforting to know I'm not alone and when I say brain fog or spacey I'm understood.  It makes dealing with this bearable.  A special thank you to you, Rumpled.