Aa
Aa
A
A
A
Close
Avatar universal

Pituitary - Surgery & Post Surgery Question

Hello Everyone,

Last Thursday I was told that I had a Macro Pituitary growth - and the size is about 2.5cm x 1.5cm -- I was told by the doctor that based on the MRI, it's close (or possibly) sitting on my vision nerve, plus it's bleeding (it has spots on it from the MRI).

My surgery is on Tuesday next week, through my nose but I'm quite afraid of this whole thing. I am told by my Endocrinologist that I will be on pills for my whole life...

Questions :

1. How do you feel after surgery?
2. Are vision affected?
3. What are the symptoms I should look for on CSF?
4. How long is the recovery period...

Thank you so much..
9 Responses
Sort by: Helpful Oldest Newest
Avatar universal
COMMUNITY LEADER
Good luck with surgery!

1 - I felt great after mine. This largely depends on the surgeon and technique. Some surgeons are not as experienced.
2. Vision all depends on 2 things - how your tumor is situated and the skill of your surgeon. Some tumors can weaken eye muscles but largely the tumor can press on the optic nerve is factor 1, surgeon is factor 2. Get the best most experienced surgeon.
3. Really severe headache that gets better when you lay down or drink caffeine and a lots of drips out the nose or down the throat that is clear and is sweet (you can use a glucometer to test it, mucous does not have sugar, CSF does).
4. Surgical recovery can be about a month or so. Hormonal - that is anyone's guess. Monitor forever.
Helpful - 0
Avatar universal
Thanks Rumpled for the advise/tips.

I'm done with the surgery, it was successful. But later on, I somehow had the CSF leak. Was pretty bad. Doctor wasn't convinced that it's CSF leak until my ENT saw the drip. (Was in a horrible horrible headache).

I'm on flat bed rest now - second day, they are pushing for 5 days in hopes that the hole will seal... Keeping my fingers crossed ...
Helpful - 0
Avatar universal
COMMUNITY LEADER
I hope you are better... yeah the docs are not fond of the leaks. Some of them take it personally but it can be an anatomy issue not a skill issue.

Caffeine can help too, or is supposed to help.
Helpful - 0
Avatar universal
Hello rumpled, thank you for your response! It really help me.

I had a second surgery on 14/11 - switched hospital (I'm located in Malaysia). My family seeked a second opinion and apparently the lumbar drain could not be prolong as it might have bacteria infection And could potentially risk my life as well, second doc suggest 5 days MAX. However, the current doctor didn't take it too seriously and told my parents off quoting 'depends on patients body' - it's like he didn't really care much, cause he wanted to drag an additional 3 days on top of the 5 days.

Long story short, my family requested a switch, and I had the surgery done again the next following day, the second doctor commented that there's been some default on my first surgery which causes all these pain.

Was discharged 7 days later .. And now having my post op recovery at home :)) ..

Did you have water retention on your face after surgery? Mine swelled - only on face..

Helpful - 0
Avatar universal
COMMUNITY LEADER
I also had to have a second surgery for an infection - but I waited for 5 months... I kept thinking the dang antibiotics were going to work.

I leaked bad after surgery but it finally sealed up on its own. A lot of people do, but yeah, glad your parents got you into another place and got you some other care!

I had a tiny bit of swelling around the nose but in your case, you had two surgeries close together, I would guess you were a bit beat up as well they were trying to close the holes... so yeah, I would expect some swelling!
Helpful - 0
Avatar universal
Hello Rumpled

Oh wow -- how did you stand the pain for 5 months on the leak? The pain was really bad for me - I could feel the pressure on my head...

The second doctor told me that the frontal lobe bit of my brain has loads of air, he had to let the air out before sealing the leak with my tummy fats -- which explains my "slow" thinking - I hope this isn't permanent.

I met with my neuro-- he said there's two possibility of the swell -- the hydrocrotisol or the surgery ...

I am told hydrocrotisol is a type of steriods. And may cause  water retention around the face area -- did you face the same water retention problem ....?

Thanks rumpled :))
Helpful - 0
Avatar universal
COMMUNITY LEADER
Denial? It also smelled really bad...  Plus I had to travel to my doc. I did make weekly trips to my ENT trying really hard to avoid surgery but finally it was decided that I just had to get it done.

I also had the fat used - I get to say I am a  REAL FAT HEAD!!! ha ha ha.

Oh yeah... if you take too much HC, yes, you can get the "moon" face. However since I have a very tiny head, when I had it, I actually looked more normal. Now I have a tiny face on a big body... :(
Helpful - 0
Avatar universal
Your last message made me laugh.. Why did it smell bad? Was there a lot of leaking... .

Didn't you experience a lot of pain - because there's air in the head...and the pressure of getting up and moving about.. Oh geez, 5 months!

I tried to convince the doctor that they need to have more fats taken out (free lipo -hey!)

I need to speak to my endo in the "moon face" don't think I can go out looking like this haha, it's really bad, I wonder if it will go off eventually.. Will it?
Helpful - 0
Avatar universal
COMMUNITY LEADER
No - the actual infection area started to... uh... fester? So it got really stinky and it was in my sinus so there was no avoiding it! It was really horrible. I was so happy when that got cleared out but then I had to keep going to the ENT to get scraped out. Needless to say my ENT knows me on sight.

I did not experience pain as the sinus sealed itself off which is why I got the infection. Normally I did not heal at all, but for some reason up there, that sinus got sealed off, and the lack of air created a perfect place for fungus and bacteria - right next to my surgical site, which had not healed.

I also tried to convince the doc to take more fat. I think we ALL do... I mean they are already there, why not!!! I just had my appendix out and they used the same incision spot and one of the docs was surprised at how thick the scar was there... I said it had been cut open 4-5 times already (sad, I have lost track ha ha ha) so what did he expect - but one for for the fat for my head.

The moon face should go down when the cortisol goes down. I am back to being a pin head. It is not immediate, changes can be so subtle - which is frustrating... when I lost my weight it was my back so I still have my belly...
Helpful - 0
Have an Answer?

You are reading content posted in the Brain/Pituitary Tumors Community

Top Cancer Answerers
Avatar universal
Northern, NJ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Here are 15 ways to help prevent lung cancer.
New cervical cancer screening guidelines change when and how women should be tested for the disease.
They got it all wrong: Why the PSA test is imperative for saving lives from prostate cancer
Everything you wanted to know about colonoscopy but were afraid to ask
A quick primer on the different ways breast cancer can be treated.
Get the facts about this disease that affects more than 240,000 men each year.