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???

[Lilmomma2006]

I'm suffer with thus as well but supposedly mine was only CSF after they got in. 12 different drs said it was a tumor they still want to go back in through the skull again. I dont know if they went to the pituitary. I know I have felt bad ever since my head hurts all the time the meds don't work. They also said I had damage to a bone. I'm just plain lost. It all started with hearing loss. Now they want to go back in through the skull. Some one help me please.

[nosretap]

I (71 years old) too was hoarse after my surgery for the removal of a pituitary adenoma (2.5 cm by 1.5 cm) transsphenoidally (over 5 hour op) for about 2 weeks. My main issue was frequent urination. Reasonably controlled by taking Minirin Melt (600MCG) each night for about 3 weeks after surgery. Also take 10 mgm of hydrocortisone  twice daily. Yet to check up on hormone balance but I seem to be all there! Also yet to determine if the partial loss of peripheral vision in left eye caused by compression was been ameliorated. Simply amazing what can be done - I was operated on by superb surgeons in the Sanatorium in Hong Kong.

[rumpled]

PLEASE DO NOT POST AFTER THIS REPLY. THIS THREAD IS CLOSED.

[friendcare]

I want to give a post op care package to a friend of mine having the operation. Can any one suggest contents.
Most appreciated

[rumpled]

There is no way I can find your original post in the mess above... Ack! This is one of the messy threads that I wish was closed...

Hope you feel better and post in a new thread, because I don't think you posted before. It helps to have your story in your own thread rather than in a mess like this.

To others- please please please do not post after this, make a new post!

[cyc4fun]

Thanks for having a great blog/info list here. It confirms a lot of what I have been going through but most importantly that I'm not alone. Would have been even better if I found it pre-surgery.

I'm a week out from surgery and going through the pain management scheme so it was good to gleem the length of time this could take. I look forward to the next chapter but my question is on the physical recovery. After the removal of the 24mm tumour and a small CSF leak there must be some idea as to when the Pituitary and surrounding structure settle into a new position and the WTF headaches subside.  

Thanks,

[rumpled]

Nothing against you Yehuda88... but this thread is a confused mess!
The person you are posting to is mixed in and in a part that is 6 years old, so sadly I don't know if he will see it, but yes, you do have a point.

I do hope that NO ONE will ever post in this thread again... it is so much nicer and easier when you post in your own thread so you have all responses to one story in one place.

It is also harder on phones for a long thread like this to load.

[yehuda88]

Hi,

check your GH level in several tests.
sleepiness at 2-4AM ,
social shyness
=are also  symptoms of low GH

[blackbutterflyy]

My tumor was removed October 2013. So its now a bit more than a year after the op.  All my hormone tests are right no problems there. But i still suffer from aches and pains jumping through my body like little lightnigh flashes and freaky twitchy feel toes and fingers especially when im relaxed or trying to fall asleep. I get cold super fast but my right arm feel like someone is injecting ice water into my bones and is way worse than the rest of my body then other days it feel like my muscles are littterally on fire burning from the inside out. My finger nail beds burn like crazy sometimes. About % months after the op i started getting super dizzy when i move forward walk fast or drive in a car not when i sit lie down or stand up fast. It feels like someone is compressing my brain squeezing it together on both sides i feel dizzy my heart starts beating very fast my legs go lame all just in a few seconds then the cycle starts again??? does anyone have these symptoms ?  

[blackbutterflyy]

My tumor was removed October 2013. So its now a bit more than a year after the op.  All my hormone tests are right no problems there. But i still suffer from aches and pains jumping through my body like little lightnigh flashes and freaky twitchy feel toes and fingers especially when im relaxed or trying to fall asleep. I get cold super fast but my right arm feel like someone is injecting ice water into my bones and is way worse than the rest of my body then other days it feel like my muscles are littterally on fire burning from the inside out. My finger nail beds burn like crazy sometimes. About % months after the op i started getting super dizzy when i move forward walk fast or drive in a car not when i sit lie down or stand up fast. It feels like someone is compressing my brain squeezing it together on both sides i feel dizzy my heart starts beating very fast my legs go lame all just in a few seconds then the cycle starts again??? does anyone have these symptoms ?  marissa.***@****

[dlhvac]

CSF has a metallic taste unlike regular sinus discharge

[SWSA28]

Hi ladyekaw,

Do you mind sharing your hydrocortisone intake schedule...?

Thanks :)

[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!!

[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.