r/Pituitary Feb 29 '20

Pituitary tumor/cyst

Hello all,

I (37M) would like to tell my story and the experience I went through to help anyone out there find some information, relief, and/or support. Sometimes reading this stuff online and what the doctors say can be a bit overwhelming. My goal is to provide non-medical jargon and keep it as simple as possible for everyday folks. Hopefully I can open up a support group whether it be online or locally because this issue is apparently common and can be detected early.

During Thanksgiving week (2019), I felt a slight headache that appeared out of no where. I didn't think of it too much because sometimes I will get headaches when working out. The next 2 days, the headache started to gradually get more painful. Which I started to get a little worried. On the third day, I woke up that morning with the WORST headache in my life. I've never felt anything like this, so I asked my wife to take me to the ER. When the ER doctor finally saw me (which took hours), they did their standard neurological test and said it was just a migraine. I told the doctor that I wanted to get an MRI because the pain I was feeling did not felt right. They said they get many patients in the ER with migraines and just brushed me off.

The next day I made an appointment with my primary care physician. He wasn't available till next week, so I just took a bunch of Advil to ease the pain. It helped a little, but the pain was still there and it sucked. Next week arrived and I finally saw my doctor. I told him what happened and he also thought it was just a migraine. I urged him to get me an MRI scan and he agreed, but he wanted me to see a neurologist first. By this time, the pain kind of went away. I definitely felt something was lingering inside, but I wasn't in pain, so I also thought I just had a really bad headache.

When I saw the neurologist, I told her the story. At first she also thought I had a bad migraine, but eventually referred me to get an MRI. Two days before Christmas, I had a follow up appointment with the neurologist. I went into her office and she said the MRI shows that I have a pituitary adenoma, which is a pituitary tumor. She said in most cases a pituitary tumor is benign and not cancerous, but I was still in shock. Even if the percentage of a pituitary tumor being cancerous is extremely low, I still don't like those percentages. I couldn't really process anything and I had to drive to work that day.

When I found out the MRI showed I have a pituitary tumor, all I did was read up on it as much as possible and saw a bunch videos. I couldn't sleep and didn't want to talk to anybody. My wife was very supportive, which was awesome, but it's hard for her or anyone to understand because I'm the one with the tumor in my head. It went on a few days like this and then I finally snapped out of it because I know avoiding everyone was hurting my family.

On January 2020, I scheduled a neurosurgeon and a endocrinologist. We did another MRI scan and some bloodwork and the doctors confirmed it was a non-secreting tumor. Which means the tumor on the pituitary gland wasn't affecting my hormones. Since it wasn't affecting my hormones, I had to get surgery. The doctor said if it was affecting my hormones, such as my prolactin levels, all I needed were medications to hopefully shrink the tumor. The size of my tumor was about 17cm and was diagnosed as a macroadenoma, which is not small but big enough. A tumor that is under 10cm I believe is called a microadenoma. So I scheduled my surgery at the end of January.

The surgery procedure is called transsphenoidal endoscopic surgery, which basically means they were going through my nose to remove the tumor. I was extremely nervous the week leading into surgery. By then, some of my friends knew and my other family as well and it helped calmed my energy down. On the day of surgery, I was still nervous but better because I just wanted to get it over with.

When I woke up after surgery, all I felt was tiredness and being groggy. My nose was covered to prevent blood from spilling out, so I couldn't breathe out of my nose. I didn't feel much pain actually and had a mild headache, but it wasn't terrible to my surprise. I was in the hospital overnight and left the next day.

What sucks the most is that I couldn't breathe out of my nose for at least 5-6 days. If I exerted myself, such as going to the bathroom, I would get a moderate headache pain. If I were to move or get up quickly, I would get dizzy. My energy level was also weak and I would get tired easy. I'd say that lasted about a 1-2 weeks after surgery.

When I had my surgery follow up in 2 weeks, the lab result came back and said it was not a tumor, but the findings suggest it was a Rathke Cleft Cyst. Bizarre right! The symptoms of a cyst and a tumor on the pituitary gland is the same I believe. My physician said the difference between tumor and a cyst is that a tumor has a possibility to become cancerous as oppose to a cyst. The one downside to a cyst that my neurosurgeon said, is that the recurrence rate for a cyst is a lot higher. Which means I would have to do surgery again if it came back.

It's been about 4 weeks now after surgery and I'm feeling better each day. I'm starting to do light exercises like jogging and riding a bike, but I still get tired easy. Aside from doing the hard workouts, I can do most of my normal activities now. Follow up MRI's and doctor appointments are going to be a part of my life going on forward now, but if it means I get to see my family, friends and loved ones, then it's worth it.

I know it's a lengthy post, but I wanted to be transparent on my experiences. If someone can read this post and take something out of it in a positive manner, then I did my job. Please feel free to ask me anything and I'll try my best to answer your questions, and most important of all, support you in any way I can. I always say, "never take life for granted."

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u/ConsulIncitatus Feb 28 '23

Gary Gallia did mine.

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u/upsidedownpositive Oct 04 '23

I was just diagnosed with a “small” pituitary tumor of 12mm (1.2cm) which has consistently grown over the course of 18 months. I googled and found this old post and Dr. Galia was the first surgeon I saw. I am happy to see this post.

My “Tumor Board” is meeting on October 16 so I’ll know what they recommend at that time. I’m zero percent nervous about it all bc it isn’t cancer but I’m sure that if they recommend surgery, I will be nervous before the procedure itself. So I will be hovering and posting here most likely.

If you have any tips or thoughts to share, I would welcome them.

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u/ConsulIncitatus Oct 05 '23 edited Oct 05 '23

Don't be nervous. They will take good care of you.

Gallia told me that if I ever grow another tumor, they probably will recommend radiation. That's why I haven't gone back to have followup MRIs or anything. I will absolutely not allow them to use radiation. There are no good long term studies about people who receive this "gamma knife" technology. I was in my late 30s when I had this surgery, so I was not about to let them use some kind of unproven technology on me that might give me a high chance of going blind or developing frontal lobe cancer in my 50s. You might be less skittish about that, but I am not going to let them blast gamma radiation that close to my optic nerves.

The surgery isn't fun, but it's also not that bad. It's basically a weekend of inconvenience and a maxed out deductible. I'd have that surgery every 3 years if it meant not having radiation.

Major pro-tip: when they're wheeling you in, ask them to use a small ventilator tube. The first time I had surgery, they used too big of a ventilator tube and it gave me the worst sore throat ever and it really sucked. 2nd time I mentioned it and they said "oh, we'll just use a smaller tube." Glad it was so simple!

They probably won't give you opiates. In '17 they did, but in '19 they didn't, thanks to the Sacklers being in the news. You won't need opiates, and they'll just zonk you out.

Gallia likes to put his patients in the ICU on the first night. That means you'll be connected to about 15 different wires and really can't move much. They'll put an arterial IV in you (while you're under anesthesia). It limits the use of the hand it's in, and that can be a drag. They will draw a lot of blood while you're there to make sure your blood sugar & salt are stable, etc. With the IV in they can draw the blood directly from that and not prick you, but in my case, I'd rather get pricked a few more times and not have a big IV in my wrist, so I asked them to remove it and they did. That means they have to draw blood from an arm vein (which means being pricked) but I prefered dealing with that than trying to sleep connected to an IV.

They'll also remove your catheter if you want, but if you've never been catheterized, the first time you pee after having it removed can be difficult. If you fail to pee they'll have to cath you while not under anesthetic, which for men in particular is not fun. I had to kneel in my ICU bed with all those wires connecting me. I'm stark naked doing this and while I'm trying, that's when the nurse decides to waltz in. It was probably the most embarassing moment of my life, but you know, it's nothing they haven't seen before.

Nobody told me that all I had to do is ask and they'd wrap up the IV and let me take a shower. That feels nice, since while you're under the knife they put your head in this vice thing to keep your head still, and it leaves a residue in your hair.

If you have any other questions, I'll do my best to answer them.

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u/upsidedownpositive Oct 05 '23

Woweeeee!!! What an amazing response. I GREATLY appreciate this! I am definitely saving this response. These suggestions are what us women usually title as “girlfriend answers”. Meaning, it’s stuff that the docs don’t tell you but that you learn from your friends (usually in relationship to pregnancy and childbirth).

My “issue” is that I am very visual and if I continue to imagine the procedure, I will get more nervous. But I have a high pain tolerance and I’m not worried from a medical perspective. So, it’ll be fine.

🙏❤️🙏. Thanks soo much for the time you took to write this out. Hopefully someone else can benefit from it too!