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Brain/Pituitary Tumors Community
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5678379 tn?1372212695

Sleep problems after transsphenodial surgery for pituitary tumor

Hello everyone,
So I was diagnosed with a prolactin tumor of the pituitary in 2010. I had a very successful surgery on 9/10/10. After going to one of the best neurosurgeons in the Mid-west I feel as though I am on the road to recovery. My issue is my sleep patterns after surgery. My first couple of months unless I was medicated sleep was not an option, and even after almost 3 years it is still not like it should be. I truly believe that I have not reached the REM point of sleep in quite some time. Does anyone else experience this? Is this something that happens after surgery? Is there anything that helps?
12 Responses
Avatar universal
How is your Thyroid numbers?  My daughter, 32years old, mentally handicapped, bipolar, and has a pituitary tumor, was having sleep trouble for over a year.  Her Psychiatrist tried every med in the book without any results.  I asked about her thyroid at one appt because her T3 had been consistantly on the low end of normal -- not flagged.  She bumped her thyroid med the smallest amount possible and within 3 days she was sleeping well and has been since - 2 years.  Hope you get sleep soon. It can make all the difference!!
657231 tn?1453836403
COMMUNITY LEADER
Jutebug has a point - post pit surgery, your thyroid may not be optimized. Are you following up with your neuro-endo to get monitored for your hormones - and are all of them in range?

Do you get copies? Things change.

It could also be other hormones, or other things. So, get copies, and check on your levels. If you have not been to the doc recently and had labs, I would do so.
Avatar universal
This happened to me, I had the surgery 2001.  I had just what you describe. It was really really bad...I totally know what you are talking about thinking you aren't getting REM.  My theory is that it is from the anesthesia.    I took Ambien for 21 days, but I'm so glad I didn't take it longer (it was new then) But that did help get me back on track a bit right at the beginning.  

I think it took at least 2 years, if not 3 to feel like I was sleeping more normal.  12 years later, I sleep totally normal (I can't tell you what the actual year was it worked itself out..it was so gradual), and no pituitary issues since the surgery. Don't worry, it will eventually work itself out.  
Avatar universal
I accidentally ran across this page and I'm glad I did.  Nice to know I'm not alone.  I had pit surgery for Cushing's in 2004 and have continued my relationship with my endocrinologist since getting "normal" has been a challenge.  I have lots of bone and joint pain, low thyroid, and sleep is difficult.  I have spent hundreds of dollars on making my bed as comfortable as possible, but still have problems.  Stay away from Ambien (too many Ambien zombies out there), but if pain is not an issue, talk to an endocrinologist about a workup for some other kind of endocrine disorder and maybe a referral to a sleep doctor.  My endocrinologist even recommended accupuncture, Melatonin was recommended to me also, but I have insane dreams with it; although  It makes sense that it would be good for your brain if you can handle it, so maybe there is some formula out there that would work. In the meantime, I just stay up all night reading until I can't keep my eyes open any longer and then sleep.  Going to bed without being totally exhausted isn't an option.
657231 tn?1453836403
COMMUNITY LEADER
I use acupuncture and melatonin... I have a lot of pain and the reason cannot be determined either.
Avatar universal
I have had prolactin of 30 and have had terrible sleep apnea for years and am on a cpap machine.  can thyroid levels be my problem?  I have had low TSH
5678379 tn?1372212695
I've never has sleep apnea before however I have my 6 month check up on the 29th so they might require testing. With my last check up my endocrinologist did testing and all my levels were fine.  I did notice several people having the same issues after surgery so could this be a post surgery issue?
657231 tn?1453836403
COMMUNITY LEADER
Do you get copies of your testing? What replacements are you on?

A few of my friends got *sinus* issues as in their septum bone was displaced during surgery and got apnea. I got an infection - no fever though! - and later had to go back and have it cut out. I just have an overall pain thing that they call fibro (ick) that worsens with rain etc.

But not everyone has it that I know, but some of us. I do know when cortisol levels go up and down rapidly too - it hurts like heck.
985561 tn?1255203960
Hi, this is Angelo from Athens Greece, I had an operation back in 2009 for pituitary tumor removal.
I had not any problem sleeping after the operation.
Wish you the best
Angelo
Avatar universal
My wife had the surgery two weeks ago and was just the opposite she has been sleeping like a baby almost 24/7 have anyone experienced this. I am worried they sent her back to SICU 4 days ago and she only sleeps vital are great but she is in a deep sleep.
657231 tn?1453836403
COMMUNITY LEADER
Deep sleep like a coma, or deep sleep like she is super duper tired?

If she is in SICU, there has to be some sort of issue? There can be sodium, CSF, or surgical issues (like strokes) that can happen rarely. So I would get more information, more copies of the tests ask more questions...

Do you know the size of her tumor before surgery, the type and where it sat (like up around the optic nerve or down in the cavernous sinus), if it was on the larger side? Was your surgeon super experienced? What has the surgeon said? Was your wife on replacements after surgery? It is typical to be on at least hydrocortisone, if not more - if not you can die.
Avatar universal
I am 41, and I too had transsphenodial surgery in 2015, i have Hashimotos, which is autoimmune underactive thyroid, and am taking growth hormone injections, all my reults for thyroid, cortisone replacement, and growth hormone came back in adequate range, but my sleep is awful, i feel like i barely sleep, i toss and turn every night, and dont feel i have any deep sleep, exhausted most of the time, i had tests for sleep apnea, they were negative, any one have any helpful suggestions please? Its getting too much.
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