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Avatar universal

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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Avatar universal
COMMUNITY LEADER
I find that a bit strange. My post op instructions were not to blow my nose, sneeze (keep your mouth open), use a straw, sleep flat (if you did not use packing, this is normal), bend over, or pick up anything heavier than 5 lbs for 3-4 weeks, not months.

If you were not given discharge instructions, you can call the surgeon's office immediately. If you cannot get them, then I would report the hospital and doctor to the state medical board.

Your HC dosing is also, IMHO, wrong, as it does not follow what a normal body does - and normally one would take the bulk in the morning, and then lesser in the afternoon, and none at night so one can sleep. I would not drive while on pain pills.

You will feel normal again, but you are healing from a major surgery so take it easy.
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Avatar universal
Thank you so much for your advice.
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1090601 tn?1257512779
My discharge instructions were the same as rumpled. I too take hycortizone. Initially 20mg twice a day and kept reducing. Now I take 5 mg twice a day morning and evening. During times I am not well for whatever reason I have to triple the dose for 3 days then return to the regular cycle. I get the 20mg tablets anyway and break them into quarters because the 5mg don't work for me so my guess is that since I can't break them perfectly I probably get a little more than 5mg in some pieces and less in others. I take the larger piece in the morning and the smaller piece at night. As time goes on you will fine tune your system and know what exactly you need. Some days when I feel really fatigued I take a little more but never less.

I was struggling until I figured out what works best for me. Normally I was always very active but would find myself in bed all of Saturday after a 5 day work week with absolutely NO energy before 2-3pm. Now I am ready to get up at 7 am which is my normal time. I have been doing some reading and the more in tuned you are with your body the easier it will be for you to adjust your meds for a fulfilling lifestyle. My Endo asks me what my doses are and verifys it's working with blood tests.

My head was cloudy before and vision poor. I thought thw vision was age (49) and I just needed reading glasses but after the surgery I could not see with them. I took my contacts out and realized my vision was better up close so I now wear 1 contact for distance. I think my employees liked it better when my head was couldy because I am back and much sharper mentally. Good luck.

Did anyone else experience hoarseness? I was hoarse for 4 months prior to the surgery and told it wasn't likely going to be the reason. I had 2 surgeries in 4 days. The first left my voice worse but after the 2nd my family noticed in the recovery room it was normal.

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Avatar universal
Thanks for the advice. I  was hoarse before my surgery and after it seems to have gotten better but not normal. I am so happy that I am more mentally clear now. I just have to learn how to go to bed at night, and get sufficient sleep. I am taking 30 mg of hydrocortisone, i take 5 mg at 10 pm. I feel like I am tuned in to my body, but sometimes its hard to read, because I have SLE Lupus, Fibro, and Chronic Anemia. Oh and Secondary Adrenal Insufficiency. I am just going to try and be patient.

Has anyone had the experience of the pituitary tumor and sec. adrenal insufficiency?
Did your Adrenals ever begin to function, or function normally?
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596605 tn?1369946627
RE hydrocortisone (H/C): Many of us to regain the ability to make it or partially make it, after surgery. So your doctor should be checking your levels regularly. Also you can help by paying attention to how the H/C makes you feel to help your doc to work with you to work out the best dosing/timing for you.

30 mg seems a little high for replacement. But then, if it is being used therapeutically for the Lupus that's another story. But, taking it at 10pm will affect your sleep if you keep a more normal schedule. I would def bring this up with your doctor, if you are having trouble sleeping.

After my surgery I came down with secondary adrenal insufficiency. I took 25mg spread out over the day with the last dose at 4pm. Now several years later, I'm taking 15mg, spread throughout the day. I also have the freedom to take an additional 2.5-5mg, if I will be having a super busy/stressful day.

But, I never take it after 4pm, unless I know that I will be need to be up really late for some reason.

For many of us Pituitary patients our adrenals work fine. The problem is that our pituitary glands don't not make ACTH (or don't make enough). It is the ACTH that tells the adrenal glands to make cortisol. In  this whole time I've had two adrenal crises. This was because I had a flu and could not take the H/c orally. Because I live almost an hour away from the hospital I keep a dexamethasone injection kit on hand. Thankfully I've only needed to use it one time.
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Avatar universal
    Here is my 13 year old son's experience, for comparison. He just had his pituitary surgery 3 weeks ago also. His tumor was mostly a cyst, that was squashing his pituitary, and it had reached the point he had very little hormone function - no growth hormone (the first to go), almost no reproductive hormones, almost zero thyroid stimulating hormone, and severe secondary adrenal insufficiency. He was put on hydrocortisone (only 12.5 mg daily, in two doses) and thyroxine (50 mcg once daily) two years before this surgery.

He got extremely ill after starting hormone replacement. It took months for his body to adjust to these meds. He was not given any other treatment and no changes were made to his doses, in spite of the illness. I "worked" with it and found he did better on 25 mcg thyroxine, and 15 - 20 mg hydrocortisone daily.

His vision changed when symptoms first began, three years before diagnosis. He suddenly had extreme light sensitivity and myopia. But he did not have peripheral vision loss as doctors said to watch for. They kept emphasizing this after diagnosis, because the cyst was just touching his optic nerves, they were concerned he would lose vision from upward growth of the cyst. They told me light sensitivity was not a symptom (but it was).
Meanwhile, they said nothing about the actual condition of his gland. Our second-opinion surgeon told us what was happening - the cyst was slowly expanding downward, flattening the pituitary, not endangering his optic nerves. ( It grew 4 mm in two years).  So the whole time I was monitoring his eyesight for changes, to signal growth of the cyst, the darn thing was further damaging his pituitary gland, causing more, and possibly permanent hormone insufficiency.

Post-surgery, he is recovering well.  You were lucky, syfy, to escape the hospital without contracting an infection. What antibiotic were you given for surgery? My son contracted C.Diff as a result of the cephalosporin antibiotic he was given during and just after surgery. He was so sick! He had to deal with this intestinal monster as well as the usual endonasal transphenoidal recovery bleh, congestion, nose bleed, dizziness. He didn't get a headache bad enough to take anything for it, amazingly.
He was switched to dexamethasone for surgery and is being kept on this at a low dose, 0.25 mg daily, instead of hydrocortisone. Different doctor, different treatment. They are hopeful he will regain ACTH function eventually.

He has other problems though. He developed severe orthostatic intolerance 10 months prior to surgery, and he still has it. It wasn't treated, all docs suspecting the tumor as the cause. He had orthostatic vitals done in hospital, and just missed the standard for a diagnosis of orthostatic hypotension, so for now they just say do physical therapy, see if it helps. HA! Tell that to somebody with severe POTS and see what they say. His tachycardia is scary, but he has a lot of health problems, I think are associated with loss of growth hormone and intestinal malabsorption issues.
His nutritionist had him do a test 5 months ago that included ANA - it was 1280. (His level was 320 two years ago). He may have an autoimmune disease developing - this needs to be rechecked asap, in my opinion.

He's always been sharp mentally and cognitively. No changes there.
Sleep - lots of trouble with sleep. I think he's always had high nighttime cortisol, even as a tiny child (maybe an early warning symptom? Also wet the bed until he was six, but I think this was from soy allergy - that's another sad story, for another time.)

When adrenal insufficiency began, of course he couldn't get up for school in the morning, but was okay late afternoon, and always up late - couldn't fall asleep. This got worse and worse, and I began homeschooling him after diagnosis, to help him deal with the fatigue and stress. (School personnel didn't understand the severity of the problem and were being difficult, kept pushing him to do his best etc. which he always did anyway, quite the perfectionist).
Anyway, he began sleeping in mornings, taking hydrocortisone even in late evening to help with nausea, stayed up later and later on the computer at night and - voila! - a completely reversed sleep cycle. Look up Delayed Sleep Phase Syndrome. Four months ago he began going to bed at 5 or 6 in the morning, and getting up at 2 or 3 in the afternoon, if allowed to sleep as long as he could. A few weeks before surgery he sometimes went 24 to 36 hours without sleeping, and last night he set a new record - 41 hours without sleep. He doesn't like this though, and says he wants to get on a regular schedule. The doctors seem to think it shouldn't be so difficult to change, but it's very difficult. At least, when he DOES sleep, he sleeps soundly for 8 or 9 hours, and wakens feeling rested.
He does have trouble trying to fall asleep and this is a big part of the problem. He trembles, and has something like adrenalin rushes that jerk him awake many times, just as he's falling asleep, and he has something like central sleep apnea at the time ; he stops inhaling for  5 to 10 seconds just before the rushes. His brain evidently isn't getting enough oxygen and it takes 20 minutes to an hour for things to sort out and let him fall asleep.
But he had many tests in the hospital after surgery and nothing very significant was found.  He did sleep normally, 10 pm to 7am for a few days home from surgery,(he was so exhausted!) no rushes, so although it's bad again now, I am hopeful we can change this soon.
Actually, he does have some psychological problems now from all of this, which I understand is common with pituitary disease. He has "premonitions" that scare him and won't sleep in his own bed anymore, because he had a vision of himself lying dead in his bed. He sleeps in the living room on the daybed now. In fact, the orthostatic intolerance began the day his guinea pig died, in his bedroom. The shock was too much for him. Hmmm... I will have to look into this further, but finding a good psychologist, well, that can be difficult.

So there you have it - different, yet similar. Oh, my son's tumor was diagnosed as a 2 cm cystic craniopharyngioma, not a pituitary adenoma.  
SYFY - what size and type of tumor did you have?
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Avatar universal
I the tumor was found in january of 09 and they said that it was about 5mm and so I was first put on Bromocriptine then changed Endo. and put on cabergoline 2x's a week. Well 6 months later when they found that the tumor had grown to 10mm, my neuro surgeon said we dont want to let it keep growning at this rate and not do anything. so middle of october i had the transphenoidal surgery and he said it was benign. When i went to the office yesterday they still werent able to tell me if it was a secreting tumor or non secreting tumor. So the nurse is going to get that info and call be back with it. I had also just received some labs back from my Endo and it had shown that my prolactin levels have gone back up. So i am going to have another MRI next month and repeat labs next month. I am not freaking out but do want to express concern that the prolactin levels have gone back up. Hopefully not one cell was left. I had an absolutely excellent surgeon, but as we all know the human body is tricky. I do experience alot of sleep issues and if the dose of hydrocortisone that i take at 10 pm is contributing to that then i want to stop taking it.

Has your son or anyone else experienced weight problems with the hydro.corti?
I am sick of this weight...uggggh
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Avatar universal
COMMUNITY LEADER
Your thyroid may also be off - has that been tested? Once you have pit surgery, well, the pit can get a bit, well, upset that it has been wacked and stop working for a bit so you have to watch hormones forever and ever.

Thyroid can also raise prolactin - I think you need more testing.
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875426 tn?1325528416
I wonder if my tumor, though reportedly about 5 mm, down from 6 & optic chiasm clear, is why my left eye has gotten so poor in vision?  Last I was told, 20x70 in right and 20x150 in left.
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Avatar universal
COMMUNITY LEADER
Usually if vision is directly impaired by the tumor, it is cutting off the vision on the sides.

However, many of us will tell you that after surgery that we find our vision to be clearer and have less headaches. The surgeons may find it anecdotal - and I don't know if it has been studied. I certainly saw better after surgery and was told to wait to change prescriptions for 6 months.
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1090601 tn?1257512779
My tumor was 8mm and resting on the optic nerve. After the surgery my vision had improved as far as needing reading glasses. I was always myopic so I still need correction for the nearsightedness.
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1473694 tn?1286968724
I had Pituitary Tumor Surgery in June 2003 at Tampa General Hospital Well I was very tired for the first 3 years now I have a little more energy But I have been having trouble sleeping at night. I cant seem to get on a regular schedule. I don't know if others have had this problem I did go to the VA But I was told I do nt have sleep apnea. So its not that.I was divorced soon after the surgery my ex wife did not like me not being able to work. I did care for her dad that had altimeters for 3 years. After he was put in  a nursing hime I was told I was not needed there any more After being married for 12 years I found out she had been cheating for the last 5 years of my Marriage. I am relived to be pout of that abusive situation Oh I forgot I was verbally abused and Mentally abused as well after my Surgery I was made to feel I was not worth anything. So it has taken me 5 years of counseling at the VA to get back some self esteem. I have not dated much and I don't have any friends here in Gainesville,Fl. So for me it was a down-heal ride to the bottom I was also homeless after going to my parents for help. I was put in jail for arguing with my Dad I had made up with my dad and had a good relationship after that happened in 2005. I came back to Florida in Jan 2006 Thank God The VA was here to help me get my SSDI I had a great Case Manager who drove me to Atlanta,GA for the hearing. I am still unable to work now. I dont have a socal life but I am, talking to 2 women online one who is also disabled and does understand where I am now.
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Avatar universal
COMMUNITY LEADER
I am also disabled after my pituitary and adrenal surgery. I am on SSDI too. But it sounds like you have been through the wringer!
How much hormone replacement are you on, and are you still being monitored for your hormones? Have you had any follow up MRIs? Did the surgeon deviate your septum - therefore you are having breathing issues? That can happen.

What kind of tumor did you have?
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Avatar universal
I am 36 years old male and here goes my story pertaining to the pituitary gland:

In Mar/2010 I noticed that my left eye sight didn't seem as good as the right one. The difference was really negligible so I thought I only needed new contact lenses. The optometrist changed my contacts lenses as she always does, but for the first time in 23 years I wasn’t really satisfied with the results. She booked an appointment for a vision field test. The results showed a big loss on my left peripheral vision and a small one on the right. She told me I needed an MRI because my eyes were not the problem. I had an international trip that night, so I decided to go anyway and follow up the problem from there. The MRI and the neurologist confirmed her suspicion: I had a macroadenoma on the pituitary gland. I had no other symptoms apart from the eye sight and apparently my tumor was non  functional. To be honest, I exercised from 3 to 6 times a week and I felt like I was 20 years old.

The surgery went fine in November, but from the beginning I was urinating 500ml every hour. I was put on ADH which really worked wonders. Apparently the rest of my blood tests were OK. I got painkillers and antibiotics in the hospital. I was told not to blow my nose, lift heavy stuff, bend over, cough or sneeze with my mouth closed.

When I got home after a 2 hours trip, I felt like my house was at -10oC. I couldn’t get myself warm. After 15 minutes like that and with my hands getting num and purple I called 911. I kind of freaked out because I thought it could be a cloth, stroke or any of these nasty things. The guys from EMS looked at me like “really?”. After I explained the situation to them and anecdotally started shivering they took me in just in case. They didn’t find anything serious so they released me. I personally think I have developed some sort of circulatory issue after the surgery.

The ENT surgeon checked my nose two weeks after the surgery and told me everything was fine. The dripping from my nose continued for two weeks. I really freaked me out trying to tell “regular” drippings from CSF leaks.I am still waiting for my endocrinologist appointment (4 weeks after surgery) and to return to the neurosurgeon (8 weeks after surgery). Quite frankly, I thought I was going to be followed up a lot closer than I was.

Three weeks after the surgery here goes my status:
  - I am sleeping well on my side. I am not sure I should be doing it though.
  - I feel usually tired during the day
  - I am very very sleepy at 11:00AM no matter how well I have slept the night before. I got back to work, but it is really hard to work like that.
  - I have almost no headaches (except if look down for too long)
  - Until a few days ago I had pains that would move from one part of my body to another. I am not sure whether this is from a throat infection though.
  - My heart rate was historically around 65. Now it is inexplicably around 95. I have no idea if this is due to the surgery itself or due to a messed up hormone.
  -  I have low appetite. I used to eat like crazy before the surgery. Strangely enough, I am not happy with this :-)
  - If I stand up too quickly, I may feel dizzy. As I mentioned before, I think this is a symptom of a circulatory issue. Hopefully something transient.
   - I never had trouble with cold, but now I am constantly feeling very cold. Circulatory issues anyone? :-)

To sum up: I felt like I was 20 years old and now I feel like I am 70 years old. I am still thankful though and I am hoping that my new issues will go away after a few weeks. If not, I hope that some hormone replacement therapy will do the trick.
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Avatar universal
COMMUNITY LEADER
You may or may not have suffered pituitary apoplexy - did they do a follow up MRI? If not, get to a pituitary center and get a neuro-endo to get some follow up. You should have gotten, yes, a full battery of testing, imaging and more hormones  - if not surgery. You need a pituitary center - not an ENT - a pituitary doctor, pituitary surgeon - all pituitary people and then you can get the treatment you need.

You do have a CSF leak - which is nasty enough. But something changed up there and they have not addressed it. BTW, a macroadenoma requires immediate surgery. Someone dropped the ball.
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596605 tn?1369946627
yup
Sounds like a leak to me. It can be patched through the sinuses. This is dangerous as it is an opening into your spinal fluid for meningitis!!! consider it an emregency particulary if you have actual fluid coming out of your nose.

Are you on any hormones at all?
Horselip
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Avatar universal
Hi,

I got a CAT scan the day after the surgery. The neurosurgeons told me that the results were fine. On the hormone side, I got tested very often in the hospital (right after the surgery), but they only addressed the antidiuretic hormone. I was happy to look at the other hormones later, but I thought it would be one week later, not four weeks. You know what, this conversation inspired me to call there and ask for an earlier appointment.

When it comes to leaks, I failed to mention that I had a leak during the surgery and they patched it with a fat graft. Since my surgery was an endoscopic transphenoidal one, I had quite a bit of "OK" dripping (blood and mucus from my nose). It was hard though trying to tell the OK dripping apart from a possible CSF leak. Until now I am scared with the possibility of having a micro leak that does not reveal itself but will get me meningitis.In a week I think I will leave my head hanging low for 5 minutes and see if something drips... I don't want to do it now though as it is still a bit early.

When it comes to the delays, by late August I had an MRI that  showed the macroadenoma, but I went through a bunch more tests and DRs before getting the surgery scheduled to November.
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Avatar universal
Hi,

  Sorry, I wasn't very clear about the CSF leak in my first post: I did get a leak during the surgery and it was patched. All or almost all of the drippings that I got after the surgery were from my nose (blood and mucus mostly), but sometimes it was kind of clear enough to get me thinking if that particular one was a leak from the graft. I didn't get any drippings in a while now, so I am planning to run a test in a week by tilting my head forward for at least five minutes and watching for any dripping. If I get anything clear I will go straight to the ER.

  Right now I am only on ADH. The endocrinologist at the hospital checked my blood many times, so I am assuming that the other ones were not too bad. In the other hand, if the other hormones are fine how come I am experiencing all these changes with my body?

Regards,
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596605 tn?1369946627
Hi-
Good that you are having your hormones followed up on.

I think I misread your post and jumped the gun.

If you have a CSF leak you will have a clear slightly salty/metallic tasting fluid that drips down the back of your throat or out of a nostril. It might not be rapid or gushing though.

You would also most likely have low pressure in your spinal fluid because of the leak. One way to tell is that you could have head pain when you are upright that goes away when you lie down.

If you have either of these things bring it up with your doctors. Otherwise you are probably healing just fine!
Sorry if I worried you.
Horselip
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Avatar universal
COMMUNITY LEADER
Do you feel better if you lay flat or drink a lot of caffeine? Those are stop-gap ways to help leaks (as in you can do them at home).

I had crud coming out of my nose for some time - if it smells horrid, it may be infection. If metallic, that is CSF. Another way to test CSF is to use a glucometer as CSF has sugar, and snot does not.

Usually one gets more follow up post op pit - and has replacements for hydrocortisone (cortisol) and thyroid - which may account for why you feel old.Growth hormone is usually the first  hormone to go but that is usually a more subtle downturn in most people. Do you have copies of your testing? If not, get a copy. In range is one thing - but where you should be is another.
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Avatar universal

No problem!

I have my hormone replacement drugs now, but I didn't have them (except for ADH) right after the surgery.

Now it is week #6 and I am getting PREDNISONE, ADH, LEVOTHYROXINE and TESTOSTERONE. I was a little bit on the low side on the hormones replaced by these drugs.

After just a few days I could tell a significant improvement. Hopefully, as weeks go by I may even be able to get off some of these hormone replacement drugs.

Thanks,
Guy
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Avatar universal
Hi,

  it seems that I didn't have a leak after all, or if I had one it was a transient one during the healing process. Thanks for the information though. I am not the type to freak out easily, but the notion of having the juice around your brain leaking through your nose was a bit too much for me to stomach.

  I will keep on taking my hormone replacements and hope that from now on things will only get better.

Thanks!
Guy
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Avatar universal
COMMUNITY LEADER
Oh I had a lot of stuff leaking out - I am surprised you did not have the um, state of new jersey fall out! LOL... some of the scabs can be huge, nasty and icky....

Why does your doc have you on pred? Watch that... it is nasty stuff...

Keep healing!
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Avatar universal
For sure, pituitary surgery is not exactly lots of fun :-)

My blood work revealed that I am on the low side of a few hormones. For now the Dr. put me on a low dose of a few of them (e.g. Prednisone 5mg). In a few months I am going to go through what I think is another cortisol stimulation test and then we are going to go from there. Hopefully I will no longer need some or all of the hormones that I am taking now.

Thanks!

Guy
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