Anyone have lingering symptoms after pituitary tumor surgery?

@mattey741
Matt, thanks for your comments on my post. I’m sorry you have had a rough go of it and can certainly emphasize with you. I appreciate your sharing the good as well as the bad experiences you had. It provides perspective. It also leads me to realize there are many different outcomes after this surgery as each person is different with different circumstances. Thanks again. All the best to you.

@mattey741
Thanks for the follow up. Best wishes

I finally feel like I’ve found someone experiencing similar symptoms to what I’ve been dealing with after surgery. I had a successful pituitary tumour removal just over a year ago (November 2024), and since then I’ve had multiple scans and blood tests — all showing no remaining tumour and all hormone levels returning to normal on three separate occasions. That part is fantastic news.
However, ever since the surgery I’ve been experiencing a recurring lightheaded or “floating head” sensation. It comes and goes, but it happens every single day, and it has significantly impacted my life. Over the past year I’ve seen five different specialists — ENT, an eye specialist, an ear specialist, and multiple follow-ups with my neurosurgeon. Every doctor tells me my results are perfect, but I still feel awful most days. I usually only get one day a week where I don’t feel lightheaded. Alongside this, I feel extremely lethargic and low on energy, and in many ways I actually feel worse than I did before surgery — especially considering my tumour was an incidental finding and originally caused no symptoms.
The constant lightheadedness has taken a toll on my mental health as well. I’ve had panic attacks and ended up in the hospital several times because of them.
After a year of these symptoms and being told repeatedly that I’m “100% healthy,” my neurosurgeon has now referred me to a neurologist, who suspects I may be experiencing “silent migraines.” I’ve started amitriptyline at 10mg, and while I saw slight improvement for about a week, I’m now 12 weeks in and still dealing with the same symptoms. My dose is being increased to 36mg, with a plan to reach 50mg if necessary.
This whole experience has left me feeling very worn down. My neurosurgeon has told me I’ve had the best recovery possible — tumour removed, no hormonal issues, no long-term medication needed — and that I should be feeling 100%, yet I feel far from it. I’m now in therapy trying to come to terms with the possibility that this may be my new normal.
After seeing so many different specialists and still having no clear answers, I feel like I’m at a dead end if this medication doesn’t work. hoping someone has something i've missed or recommendations as i do feel very defeated by this whole thing and wish i could return to a normal pre surgery health.

@justinmoly
Good evening, sorry you're dealing with this. My symptoms and experience is very similar to yours. Really been a humbling experience for me. I have been super healthy my whole life until this pit tumor was discovered after numerous trips to the ER and doctors visits. I have a lot of questions for ya but I'll just start with have you looked into Persistent Postural-Perceptual Dizziness. I went to an ENT balance/dizziness specialist who suggested my surgery and experience may have cause me to develop this. Symptoms are very consistent and his tests indicated this may be, at least in part, the cause of my symptoms. Your symptoms sound similar. Also do you have any neck issues? My MRI shows I have severe upper neck arthritis and have sought reasons beyond the specific tumor removal as to why some symptoms persist. I wish you all the best.

@getwell88 Very very similar to myself, I had no significant prior health issues and have always led a healthy lifestyle. Please feel free to ask any questions!
I haven’t come across Postural-Perceptual Dizziness before, so I’ll certainly look into it. At this stage, I’m open to exploring every possible avenue, including seeking a second opinion if necessary even though one GP told me at some point i have to move on with life when every test is clear..
I haven’t experienced any specific neck problems however, occasionally rubbing my neck seems to make the symptoms more noticeable. I’ve had approximately three or four post-surgery MRIs, all of which have shown no concerning findings. The reports indicate that inflammation has returned to normal levels and there is no evidence of any tumour.

@justinmoly
You mentioned you had panic attacks. Was this before tumor was discovered? While waiting for surgery? Or after it was removed? Were you prescribed any medication like lorazapam or other benzodiazepines?
Any history of anxiety or mental health?
Guessing you’re male?
Age?
Health before tumor?
Is there a time of day that symptoms seem to get worse?
Was your tumor tested to see if it stained for TSH, HGH or other?
I’m not playing doctor just looking at similarities.

Im 56 YOM. Healthy all life. No mental health ever prior to finding the tumor. Multiple daily panic attacks started out of no where brought me to ER. Was on lorazapam for 6month while trying to find what was going on. I had a real difficult time getting diagnosed/dismissed and have considered that might be a factor.

Ive heard stuck Vagus nerve also has similar symptoms. I’ve read the 3pd can be acquired by injury and panic attacks.

People will read this and say stay off the internet and let medical professionals do the diagnosing. I would generally agree but when medical pros either dismiss the symptoms, contradict each other or say they are at a loss for what’s wrong it makes it tough to just sit there and suffer. My life, and sounds like yours, has completely changed in the last year. I’m going to continue to advocate for myself. Pituitary network has a book that discusses the vast differences in what people experience when dealing with a pit tumor. I was really optimistic mine would get popped out and I would return to normal. For now that’s not the case.

@justinmoly
Sorry you mentioned you were healthy before and your tumors was found incidental. I meant to ask if you were healthy before what prompted the finding of the tumor. Also was yours invading your sinus cavernous?

Guys I am scared. We are planning this surgery on my son 32 years old. Please some people tell me that they are fine after surgery.
This is scary.

@hopefulmama
Good afternoon, sorry you’re going through this. If you’re talking pituitary tumor removal, from what I have learned since dealing with this the majority of people recover quite well in a relatively short time. For me the surgery was nothing. It was the effects of the tumor leading up to finding what was wrong and whatever is going on now is a struggle. Unfortunately not everyone’s experience is the same with some taking longer. You will likely find many people who had no issues. In my case and apparently some others we are still trying to get back to normal, Mine was large, pluri hormonal, invaded my sinus cavernous. It was near an artery so it couldn’t be removed completely. On meds now that don’t sit to well with my intestinal system. Others it seems just get it plucked out and it never comes back and no issues. I’m hoping that’s the situation for you and your family, best wishes.

@getwell88
Thank you very much for replying. My son have 2cmx2cm non hormone producing tumor.
May I ask which hospital or surgeon operated on you.
Best wishes to you.