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Post Pituitary Surgery-How did you feel?
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???
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4692121 tn?1358041997
I also forgot to mention that I had taking my daughter to a Neurologist for a second opinion as to why she was always falling and breaking all different kind of bones at one point she broke her left wrist and within 2 week she broke the right that is why she was seeing a 2nd Neurologist who ordered the MRI that found the Rathke Cleft Cyst the 1st Neurologist said it was her weight and referred us to their Endo department at St Christopher's Hospital for Children. I could go on and on about this subject and everything she went through and all the problems she still has I think because it of
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657231 tn?1453836403
I would highly advise you find a pituitary center. The neuro-optho is a fantastic idea while a neurologist is simply not trained in pituitary. They may be able to order a scan, but they don't know the testing and the proper surgeons (who need to be super skilled) to treat the lesions.

Sadly, a lot of us have multiple issues in many different areas due to pituitary hormones. It can effect you anywhere.

I would suggest checking out the health pages - in particular the Magic Foundation may be of help to you. You need a specialized center to help with your daughter. I wish you had started a new thread - it is hard to keep track of new storied in mixed up stuff like this.
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After reading all these post I finally found someone with the same symptoms as myself.  After the pituatary surgery I had pain so severe I wanted to die. It was mainly on the right side of my head.  The doctor could not give me an explination. The medicine that was given to me might as well of been a grape.  I  know this sounds crazy, but the pain was so  bad after the surgery two days after I got home I had to literally cut my hair off. My surgeon is being evasive  when I ask key questions which makes me more suspicious.   This is my life.  I am going into the 7th week and I have healed 75% but now I am at a standstill. I don't know if this is part of the healing or if there was a mistake made.  I did not have these constant headaches prior to surgery.  My son asked me why I drink so much water now?  I cannot lie down.  It hurts something horrible.  It feels as though flluid is gathering at the back of my head.  Of corse this means I can't sleep.  My job is lifting all day.  Some of us can't stay off of work forever.  It was determined that I did not have diabetes and there was no hormone treatment necessary.  My symptoms don't appear to be typical.  My headaches are 24/7.  My quality of life is not the same.  I by nature am not a sickly person.   If there was a complication during the surgery would the doctor have to put it in the report?  My report says no complications.  I go through constant prayer and meditation as to not add additional stress to the situation.  I walk one hour a day.   Medicines only dull the pain, never relieve it.  
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657231 tn?1453836403
I hope that your surgeon is not the only doctor post-op - you need a neuro-endo after (and actually before) pituitary surgery. If you are drinking that much water AND peeing it out, it sounds like diabetes insipidus which is not the diabetes everyone talks about (sugar diabetes) but water diabetes - and you need to get testing and meds to get control.

After pituitary surgery it is highly likely that you will be on at least one if not more medication for the rest of your life. You may have had some hormonal loss and you have to replace. Some of the loss of hormones can be life-threatening so it is important to know what is going on. While a surgeon is an expert at cutting, they are not an expert at the hormones so he/she would not know that.

As for the pain - that is not typical. However, I have had myself after a second surgery in the area gotten trigeminal neuralgia. These nerves don't always lie in the same place in every person - even my dentist has to hunt around for me for numbing me. So I was miserable too. I suggest that you find a neurologist that helps with pain - specifically nerve pain - and there is a class of meds to try that may help you. The meds do have side effects but you have to try and see which one works with the least side effects.

That is my best guess based on experience. I also get horrible headaches when my sodium is low and cortisol is low - so if you are not on a cortisol replacement that can also happen.

You can get a quality of life back - but I don't know the replacements you are on (AND YOU NEED THEM! sometimes just for a while while the pituitary heals) and then wean back off. You need a pituitary center! I hope too that your surgeon was super experienced.

I advise getting a copy of your pathology, surgeon's report and labs  - pre and post op. BTW - what type of tumor did you have and how large?
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4749585 tn?1359960176
I just had the surgery a week ago.  I have sneezed, coughed, sniffed, laid flat - I have not blown my nose.  I had no choice but to sneeze & cough.  They told me I could as long as I did it with my mouth open and nobody said anything about laying flat.  As for sniffing - are you kidding me?  All that stuff in your nose and you aren't supposed to sniff?  Okay, now I am worried - is sniffing really a problem?  If it is then I have a major problem.  I am really feeling very tired, like I want to sleep all the time - very exhausted.  I sleep with a CPAP machine and can't use it right now so I am using an oral appliance that is only 30% effective but it's better than nothing.  I have found myself waking up out of a sound sleep taking a strong sniff in through my nose to unclog it.  I hope this isn't a huge problem.
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657231 tn?1453836403
Yes - the sniffing is a problem. You cannot use a straw - sneeze or do anything that will put undo pressure on the surgical site. You can open the site - akin to opening any surgical site only it is a bad place and you can develop a CSF leak. Then you will need more surgery.

Try this - take a biggish bowl of salted water (throw a good couple of spoons in there) and microwave it until super hot. I usually put a silicone or other soft trivet to help handle the bowl. Hang your head over the bowl and hang a towel over your head and steam yourself until you are clear. Repeat as needed.

Ask your surgeon how he feels about saline spray - some allow it, some do not. That can help if allowed. Also a humidifier or vaporizer. Some like to sleep more propped up - in a lazy boy type chair or wedge pillow.

Don't sniff!!! No blowing your nose either.
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4749585 tn?1359960176
I am using saline spray 3x's a day and Nasonex once a day.  I have sniffed quite a bit - haven't had any pain (or drainage that I know of).  Whatever drainage I have had has been clear but it's minimal.  I see my ENT on Wednesday so I'm sure I will find out some answers then.  I started taking my garlic supplements again and those seem to be helping the mucous thin out so it's not so disgusting.  I am a nose breather so when you tell me I can't do this that or the other that has to do with my nose - it's tough.  Also this time of the year is difficult for me because of my sinuses - I tend to be a human barometer so I'm constantly having sinus congestion problems. And when you live in Central NY it's a day by day thing.   I really feel good, better than I thought I would.  I just hope the doctor tells me I haven't screwed anything up by all my sniffing (and sneezing and coughing).  I failed to mention that the pituitary tumor I had is associated with Acromegaly.  The neurosurgeon told my husband that the surgery was 100% successful.  I'm assuming that means they got all of the tumor.
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4749585 tn?1359960176
Oh and by the way I am not blowing my nose or drinking from a straw.  At least I'm doing some things right :-)
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657231 tn?1453836403
I hope the acromegaly stays gone. You do still have to be monitored no matter what the surgeon says.

Do try the steam and humidifier. I know your weather - I am in northern NJ - and I used a lot of help after surgery.

Get a copy of your pathology!
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4749585 tn?1359960176
I saw my ENT yesterday.  He cleaned and suctioned out the junk in my nose.  That was fun!!  I'm not a fan of things like that but boy can I breathe better.  He told me I could blow my nose lightly - that was a relief.  He said to use a saline spray rinse because there is still a little that needs to be cleaned out of my sinuses.  All looks good but he did say to take it easy still.  Most of my life I had no problem taking it easy but I feel so good I would love to start exercising again and go back to work but I won't be foolish.  

I will definitely get a copy of the pathology report - thanks for that tip.

I will post again after I see the neurosurgeon and the endo dr.
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657231 tn?1453836403
I had the clean outs weekly... they were awful.
Do take it easy. It may not look like you had surgery - but you did and you still have surgical AND hormonal recovery to make.

I would be very prudent on the blowing... I had to wait a month.
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Hi I just had the same surgery Jan 14 2013 .  The hospital stay was 6 days I wanted to die most of those 6 days.  Now home I am so stuffed I to have been sniffling .  My husband asked do you think you should do that ? what else am I suppose to do I can't breath blow my nose or take it anymore.  It all takes time but I get frustrated and all the meds they sent me home with don't help the problems either.  I currently have D1 under control with meds.  Going to Dr. Thursday for first post op I guess I'll see how that goes.
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657231 tn?1453836403
Call your doctor. Use the bowl/towel method that I told to yoyomo - and find out from the doc if you can use saline.
Hot tea, hot soups help etc. too.

You can't really be on meds right now - you have to do non-medical clearing out. It is a pain - but it does pass. You can also do what YYM did as well - see an ENT.
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4749585 tn?1359960176
Peachesbaker 12, You poor thing!!  I truly feel for you.  I would not be happy either.  I was only in the hospital 1 day - surgery Friday - home Saturday.  I've really had absolutely no problems since I've been home except I am now VERY foggy and off balance.  Is this common?  How long will this last., Rumpled?  I'm not sure what D1 is - can you explain?  I don't understand why the dr isn't having you use the saline spray.  It's really kept me quite clear.  I also use Nasonex as I said before, once a day.  And I take Allegra once a day.  I used the NeilMed Sinus Rinse yesterday. I am not fond of it.  (The ENT never told me how often to use it - he doesn't talk at all and I've been so foggy I can't think right so I never asked him any questions - tell me why these doctors don't give you an instruction sheet to follow!!!!.)  It made me feel like I had been swimming - I'd rather not use it but I will if I can find out how often.  BTW, I saw an ENT because he was part of the surgery.  I agree with Rumpled - you definitely need to call your doctor.  Let us know what happens.
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657231 tn?1453836403
I believe D1 is DI - diabetes insipidus. Water diabetes. It can be a temporary complication after surgery where the hormone ADH gets wonky and the body cannot regulate fluids so the person is thirsty but the fluids are immediately passed.

Some surgeons allow saline, some do not. It is just the philosophy of the surgeon. The steam should be ok. I was also advised a humidifier is fine - it goes without saying all this has to be super clean.

Sinus rinses are not great. I had a huge infection after my surgery and had to be re-opened surgically then use a water pik to rinse my sinus twice a day. My hubs said the screaming bothered him as well as that I had to show him the giant scabs (that is the story I am sticking to) that came out.

I was not allowed to use steroids (as in the nasonex) - but then again, my tumor was a steroid producing type. I had enough of that.

Foggy - post anesthesia and major surgery... give yourself a break. It takes time to get back to yourself. You are still healing!!! It can take a few weeks to a month for surgical healing, hormonal is another story - that is longer and varies. Not sure for your tumor not experienced with those patients - but it takes a while longer than surgical typically for most.
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4749585 tn?1359960176
Thank you for saying that.  I am not dealing well.  This fogginess has really got a hold on me.  Surgically I think I am healing quickly but hormonally I think I am a mess.  I've been crying quite a bit today as I am doing right now. It's not helping my sinuses any.  I don't like feeling foggy.  Part of it is anesthesia but I have had a problem with fogginess periodically through mty life.  I thought once the tumor was removed I'd never have to deal with the fogginess again.  We thought it was related.  Back to square one I guess :-(  It's so disappointing.  Maybe once the fogginess from the anesthesia is gone and I go to the endocrinologist & get the hormones tested things will be different - I can only hope.
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657231 tn?1453836403
It is good you reached out. Hormones make us a mess. I know that post op I have recovered a bit and *look* better, but my tumor left me with a lot of hidden damage and I am on disability. Most of my friends (the few I have left) and family cannot understand - of course this is after years of telling me to diet and exercise.

The tumor itself has impact on hormones and that makes, in most from what I know, for foggy brains. Post op it can and does get better but I must say that a lot of us don't get 100% back - it is a percent and that percent can vary from a lot to a little depending on length of illness to severity etc.

This disease took a long long time to creep up on you and it is going to take a while to recede as well - so as frustrating as it is, it is not one where you have surgery and come out on the other end like a new person. Bleah... I wish! You need a lifetime of monitoring and may need changes to the hormones you replace, and other hormones may need to be added.

Pretty much my support system is only people that are in my same boat - aka other pit people.
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4749585 tn?1359960176
You made reference to diet & exercise - why? Did you gain weight? Lose? I work for Weight Watchers. One of the things I had problems w/was weight gain & it wasn't from anything I was doing wrong - I would gain weight & not be able to lose it. After my surgery the weight started going down fast. After 13 pounds down it has stopped & I'm at a standstill again. My endo when I first went to her  told me i needed to stop eating so much - I was insulted. I have followed WW for 34 years - my weight gain was not from eating. I counsel people how to get rid of weight - it stopped working for me.

You have painted a bleak picture of life w/acromegaly. Why don't you have any friends left?
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596605 tn?1369950227
Weight is a sensitive topic for me :)

Like you, I just wanted to say that I've gained weight too. And it really requires a ton of focus for me to lose one pound. I even have a B.S. in nutrition and was a Registered dietitian.

Ease up on yourself!!! When doctors (and others) say things like that it makes my skin boil. It can be hard. I once had a doctor that I disliked so much, because of those types of statements, So whenever I meet another pitpat that lives in my area we talk stink about this one endo.

Because my feelings were so hurt, I made a little voodoo doll and wished that she would get a pituitary adenoma and blow up like a balloon. Mean, sure. But it made me feel better and i moved on.

I don't have acromegaly but i am panhypopit and deal with a bunch of medical schtuff.And yes the pituitary gland, taking steroids, being less active and hypothalamus stuff has made me a little more generously proportioned than I would like...

Most of my good friends from childhood are still in my life. And my family is supportive. But no one but a pitpat "Really" gets it.".. I had probs with my folks in the first few years that i was sick. But I kept educatiing and even started bringing my mom with me to some of my medical appts.I think that this is what really helped us, but my mom was open to it. My pops cares but does not "get it". He never will, I think.

Not everyone's folks are still alive. And some of us have family that don't care to make that effort. I have found that by being involved in forums such as this one.your fellow pitpats just get it more because they deal with some of the same stuff.

So yeah, things can be rough. But I feel very lucky to be alive , most of the time, : ) and have a decent life. It's just different than I thought it was going to be.

Hang in there-
Horselip
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657231 tn?1453836403
Sorry I painted such a bleak picture - I am in the midst of a pity party...

I had Cushing's disease. If you look at the pics on my profile, you will see that I gained quite a bit. Not every tumor causes that - however, acromegaly can cause some physical changes. Met a few patients just not in the network where I am in regular contact. I know my tumor changed my appearance drastically from my face to my body and I have never regained that back. I eat a pretty healthy diet (except for oodles of salt, which I need) and I track my food but more than one doc has called me a liar to my face.

I am panhypopit now too. And no one around me really gets it. My husband is pretty good - he has kept me alive a couple of times when my cortisol gets wonky low and I get too stupid to take meds because when my cortisol drops, I can't think. But the rest of my family pretty much thinks I am ok, a freeloader, and why do I sleep so much? I should exercise more, etc etc.

I had a great job where I was a manager, traveled a lot and was in a fast paced work environment - I just will never be able to do that again and it makes me very sad. I miss work and my old life and frankly no one understands the loss and just dealing with a new body, the hormones and all. I feel lucky too - I am alive, but I just won't be like I thought I was going to be.

Friends just don't know how to deal with the *new* situation. This is not unique to us pit peeps though - my cuz with cancer said the same thing happened to her so when she recurred, she spoke to me about it. People don't know how to be around us. What to say. I know my hubs is tired of the tumor talk but it seems every time we pits get together, it happens. LOL.

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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?
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657231 tn?1453836403
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.
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4749585 tn?1359960176
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?
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657231 tn?1453836403
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.
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4749585 tn?1359960176
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!
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657231 tn?1453836403
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.
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4749585 tn?1359960176
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.
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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.
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4749585 tn?1359960176
That must make you feel very  good.  Where do you live? Experience professionals are definitely a plus!
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I live in Alabama, close to Birmingham. The hospital is UAB.
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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 .
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657231 tn?1453836403
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.
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6436564 tn?1381278046
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!!
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6500169 tn?1381866104
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?
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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 ?
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7734321 tn?1393763564
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.
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657231 tn?1453836403
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.
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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!
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Hi ladyekaw,

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

Thanks :)
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CSF has a metallic taste unlike regular sinus discharge
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11964412 tn?1422455244
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.***@****
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11964412 tn?1422455244
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 ?  
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Hi,

check your GH level in several tests.
sleepiness at 2-4AM ,
social shyness
=are also  symptoms of low GH
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657231 tn?1453836403
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.
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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,
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657231 tn?1453836403
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!
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I want to give a post op care package to a friend of mine having the operation. Can any one suggest contents.
Most appreciated
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657231 tn?1453836403
PLEASE DO NOT POST AFTER THIS REPLY. THIS THREAD IS CLOSED.
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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.
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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.
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