Recovery time post transphenoidal pituitary surgery

[Wyodane]

Hi Everyone,
I am going in for surgery to remove a pituitary microadenoma on August 4th. The tumor is stable at 7mm. I have had the diagnosis since 2009, and has been managed with Cabergoline since then, which has helped my symptoms of amenorrhea, but has not done much for my fatigue. I recently found out the tumor also produces Growth Hormone, and this is why I was advised to get surgery now.
I am wondering what experiences others have had regarding recovery from surgery? I know the standard stuff on what to do/not do, but I lack info on how people feel - is there still much fatigue, and what about headaches/other symptoms?
I am also wondering if people bruised up a lot from transphenoidal (nasal) surgery? Swollen nose/eyes or anything?
I am anxious and also excited to have the surgery over with soon, but am wondering what to brace myself for (aside from winter of course lol).
Thank you all!
Wyodane

[rumpled]

I did not drive for a while, but I cannot remember how long. I lived at the time in an area where I could walk to a lot of things within a couple of blocks. I know things like grocery shopping though were terribly hard.

I took... uh... 8 months to go back to work... but I was not a typical person. I also had another surgery for an infection. I think most of my friends took at least 2 months. I don't know anyone with Cushing's that did 2 weeks, perhaps with a prolactinoma or something (which effects less hormones). It does take a while to find your feet - and the crud falls out of your head for a while.

After the infection surgery, I had to go to the ENT weekly for scraping - it was just awful, really awful.

[LucyEvony]

LOL
Im 5 months post op and still not back at work

I didnt drive for 6 weeks, but ive stopped driving again as my vision is so blurry

I honestly dont know how people return to work after 2 weeks !!!!

I was in hospital for almost 2 weeks post !!! \

CRAZY

[Wyodane]

Thank you Rumpled! I did end up calling the doctors at the hospital and they told me not to be worried...I guess I was just being overly paranoid. It is difficult to know what to think though when you all of the sudden have all these new things "wrong" with you that you never experienced before.
I am being careful not to put any pressure on the area and sneeze with my mouth open etc - but yes it is really easy (on the days/moments where you feel great) to forget that surgery was not that long ago...
How long after surgery did you feel okay to drive and such? I still am not driving and don't plan on it until after I have visited with the endos and my doctor's assistant on the 28th. I am just a bit surprised at reports of people that have returned to work/normal activities after only two weeks - I definitely don't feel ready for that. I still have crazy fatigue and brainfog at this point...

[rumpled]

You should not IMHO have discharge at this point.

I was still feeling a bit sore about the nose, a bit plugged up - but I would go see a good local ENT and get an opinion.

You could have a leak. If anyone in the home has diabetes, test the liquid with a test strip and see if there is a sugar in the stuff, CSF has sugar, snot, not. If sugar, get to a doc ASAP.

Still you are 2 weeks out, and you cannot - CANNOT - be healed, so no throwing your head around, getting up fast, straws, pressure on the surgical site... so do take it easy!!!!!!! Rest.

See the doc if you are worried. Call w symptoms it cannot hurt.

[Wyodane]

oh and bloody mucus discharge still continues 0.o

[Wyodane]

Two weeks out of surgery now. I got the pathology results and, as suspected, the tumor did secrete both prolactin and growth hormone. Good to know it was what they thought. I am doing reasonably well post-surgery. My sense of taste is returning, which is nice! And my headaches are mostly gone, however, I do have some other symptoms that worry me:
- from time to time I get really woozy, not room spinning dizzy, but a feeling of being off balance. It can happen when I am walking (feels like all the blood leaves my head) or even sitting still - once i happened while I was lying down! Kind of feels like when you are drunk and not stable on your feet.
- The last couple of days I have had what feels like a lot of pressure in my veins in my neck (from behind the ears and down the neck), and they seem swollen...
Do you think there might be a problem with blood pressure? I don't know if I am just being too sensitive or if this is something I should go to the doc for. Hoping someone has similar experiences and can tell me what this might be..
Thanks again,
Wyodane

[Wyodane]

Thank you Rumpled and LucyEvony:-)
You both are making me feel much more at ease with the situation, and I really needed that!
The off-balance thing is very unsettling, but you are right - it has only been a week since surgery and I should keep that in mind.
The loss of taste is weird, but getting better everyday. At first I couldn't taste anything, then I could only taste bitterness (even things that should be sweet or salty were all bitter), but now I can taste spicy things! Progress is happening:-) I am still totally zapped for energy, but am feeling more optimistic today.
I hope you both are feeling well today!

[rumpled]

I lost taste for quite a while - I forgot that. And the numb thing. I forgot because overall I was feeling better.

The discharge will last a while. I used steam to help move it along.

You just had surgery - take it easy!!! Some of that is standard after any surgery! Keep your feet up, but there can be sodium weirdness post op, so if you get too puffy, call the doc.

[LucyEvony]

What your experiencing can be perfectly normal. Even the Anaesthetic can cause you to feel weak and off balance for a while.

It may not seem like you just had major surgery but you did !!!

Just take it really easy for about 4 weeks...if its progressively getting worse...go see your doctor !

Sounds like your doing ok so far though :)

[Wyodane]

I am now almost a week out of surgery. I was told it all went very well, and that the docs think they got all of the tumor (it was fibrous for some reason which they say made it even easier). Stayed in hospital for 2 days - was up and walking with assistance by end of first day. By second day, I was able to just get tylenol to manage headaches - no more morphine/oxycodone.
Now that I am home, I have these symptoms/effects/experiences:
- I feel off-balance, cannot walk confidently, and even feel "off" when sitting still
- I have nasal discharge that is mucus tinged with blood (gross, I know)
- I have headaches that have remained tolerable with tylenol/have not gotten worse
- my sense of smell and taste was gone, getting better now
- I am very tired, and have a hard time focusing on things such as reading/writing
- my ankles retain water, but I have not noticed abnormal rates of urination/drinking fluids

Okay, so I am mostly worried about the wobbly-ness/swaying/off balance feeling - it is creeping me out and I cannot find any mention of people experiencing this after this type of surgery (might be due to my lack of ability to focus though), so I wanted to ask here if anyone had had this happen + what they think it could be?
I am not on any medication now other than over-the-counter tylenol for headaches. Thank you for your help!

[Wyodane]

Hi Rumpled,
Thank you very much for your detailed reply:-) I have more questions about your experiences, but I will post them in a separate comment. I truly appreciate you taking the time to answer, and I hope you are doing excellent at this point in time:-)

[rumpled]

I had my surgery 10 years ago. The recovery is not bad at all.

I actually felt great after my surgery and took only a tylenol. My ears, which ring constantly, were ring free for a few days and it was wonderful. I had a tiny bit of a leak that finally resolved, and they had to watch me for how much I peed for a while, which is standard.

I traveled to my hospital and I walked out and walked about .5 mile to my hotel no problem. I slept fine (my surgeon had orders to sleep at a 45 degree upright which was probably the hardest part of my post op orders) and I could use no straws or anything that could put pressure on my surgical site - but I did fly.

A humidifier and lip balm was most helpful. You can get huge scabs falling out which can surprise you (and appall you) so just be mindful. They can choke you too.

Surgical recovery is not bad. Hormonal recovery though, is another story and varies - that is where the fatigue and sodium and other issues come in. So keep track, and make sure that you don't overdo even though people and yourself cannot see that you had a surgery, you did and it was a major one.

I was only in the hospital 24 hours after my surgery.

Some docs are a bit more invasive with automatic spinal blocks (in case of a CSF leak, which are frankly rare so not sure why that is done - and my buddies that used those surgeons had a longer, harder surgical recovery. Some docs use packing, some do not. So it can all vary.

[Wyodane]

Thank you for your reply LucyEvony. I am so sorry to hear that you have had such trouble with your recovery:-( It sounds like your surgery was a lot more complicated than mine will be (my tumor is luckily small and there should be no need to remove part of the gland itself) and you had so many scary complications:-( I am sad to learn that you still are battling complications this long after surgery, and I hope the best for a full recovery for you very soon!

[LucyEvony]

Hi,
I am sure everyones recovery story will be different.
So i can only tell you about mine.
I had 95% of my pituitary gland removed 21st march this year.
I am currently 19 weeks post op.

I was in hospital for 11 days post op 5 of those days was in the high dependency unit. There was very little swelling, very little bruising except where they took blood tests from. My face was fine !

I was so sure i was going to have trouble breathing through my mouth. I was fine. I was worried i was going to sneeze heaps and do damage, i didnt sneeze for weeks, not til the nasal hairs started to regrow.

I actually dont remember the first 5 days post op at all.'

Pretty much i dont think the actual operation was that bad at all.

I did have diabetes Insipidus immediatly following surgery and was pumping out urine faster than the docs could get fluid into me. Eventually the desmopressin kicked in, then i blew up like a balloon with excess fluid on board. It took a few days to sort the whole water balance out. I dont remember any of it lol. My sister told me everything later. I had a catheter in so i didnt have to worry about toilet n what not.

Once i was discharged i still had pretty bad fatigue for weeks. Then my cortisol started rising again :(. I have been feeling a bit better, but now im back to cant sleep at night, sugars are sky high again, blood pressure is ridiculous etc.

but you dont want to know about all that !

As far as i can tell you the actual operation itself and the immediate recovery period is not so bad at all :)

I wish you well with your surgery.