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Saying Hello! Just had surgery for a pituitary tumor
I was just told about this group today. I was diagnosed with a pituitary tumor on June 10th after sudden symptoms, somewhat rushed to Mayo, and had surgery June 12th. I was totally healthy before this.....had never been sick, other than cold or sinus. In two months my entire life has changed. I am so very thankful that the tumor was benign, but still struggling. I feel like no one around me understands, and would so much like to connect with others who have had this experience (yet, I so wish no one else had to experience this). I also want to say, so thankful for Dr. Tawk and the whole team at Mayo. So appreciate any thoughts or feedback:)
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Hello @daphne2020 and welcome to Mayo Connect. I'm also glad that you found this patient support community. I am glad to hear that your tumor was benign and that your medical team at Mayo was so great! We do have a current discussion group for members with pituitary tumors. Here is the link,https://connect.mayoclinic.org/discussion/pituitary-tumor-symptoms/
How do you feel now? Any problems that you would like to post?
It is so nice to meet you Teresa.......thank you for your response. I am so new to this. I guess I should go to the discussion group? Is that a different group than "Brain Tumor?" It appears that my tumor bled, causing neurological symptoms within a very short time. It affected the third and sixth nerve (related to my vision). After the surgery, my right eye lid that had dropped came up, but I still had double vision, and my right eye was pulled inward and would not move to the right. Within the last week, my right eye can now track all the way to the right, but it is still pulling inward. I am also having some sinus issues, but I do not know if that is because of the surgery or just normal. That is my struggle......I do not feel normal anymore:( Every time I have an ache in my head, I fear the tumor is coming back at warp speed. I will go for my follow up MRI in September. They are not sure if they got all of the tumor as was near the carotid artery. My tumor is non-functioning, so I am also thankful for that. I am a mental health therapist, and I went back to work a month after the surgery, but due to COVID, I am able to work from home via Telehealth. Therefore, I am looking at a computer screen all day, everyday, with my double vision. I will then get headaches, that induce fear that the tumor is returning. I have always been a laid back person, but now I am never fully relaxed. I am trying to have faith, say my prayers, and stay positive, but I feel like an alien and have so many questions that no one seems to be able to answer:(
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2 ReactionsHi @daphne2020, I'd like to add my welcome. You posted perfectly in the Brain Tumor group, where you'll find members talking about pituitary tumors in several discussions, including the one that @hopeful33250 pointed out to you. Here's a brief inventory:
- Looking for others with Pituitary Adenoma https://connect.mayoclinic.org/discussion/i-like-to-now-if-their-is-anyone-who-has-been-diagnosed/
- Pituitary brain tumor removed, daughter has nerve pain 10 years later https://connect.mayoclinic.org/discussion/post-brain-surgery-nerve-pain/
- Pituitary microadenoma causing hormonal issues https://connect.mayoclinic.org/discussion/pituitary-microadenoma/
- Pituitary macroadenoma tumor removal and short term memory loss https://connect.mayoclinic.org/discussion/pituitary-macroadenoma-and-short-term-memory-loss/
- Pituitary tumors https://connect.mayoclinic.org/discussion/pituitary-tumors-1/
I'd like to bring fellow members, like @astaingegerdm @dmedina71 @ladydove417 @parrotqueen @beckymattair @cherriann @cheryl1 and @gemttaz to join this conversation to share their experiences with surgery and recovery.
Daphne, I can imagine that using a computer screen all day must be a challenge with recovery. Are you on video calls or audio only?
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1 Reaction@daphne2020 - I welcome you too!
My daughter had a pituitary adenoma removed 10 years ago at 27. She had Cushing’s disease, cortisol producing benign tumor. Yours was non- functioning? That’s great! Is your vision problem resolve on its own? My daughter lost peripheral vision just before surgery, but it resolved on its own after surgery.
The sinus issues you mention are most likely from the surgery- they usually enter under upper lip.
Her surgeon was also not sure if any tiny part remained because of how close it was to the carotid artery. Nothing showed on follow upMRIs. The surgeon told her that if it was still some cells left she could be treated with gamma knife, I believe.
Nobody feels normal after that surgery- it will take some time. You are right, nobody around you understand what you have been through- you look normal. It’s like an invisible illness.
I hope some of the others with pituitary experience will also respond to your post.
Hang in there - it will get better-
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2 ReactionsDaphne, about your double vision, I experienced that as well, I had a brain surgery in 2015 to remove a craniopharyngioma. I bit of my pituitary was involved and that led to double vision. I needed to keep the eye covered and the "always fashionable" black eye patch just wasn't the answer. Because I wear glasses I knew about the existence of clip-on sunglasses. I bought a pair, had the dark lens removed so the good eye could see and left the dark lens in place to act as a patch for the eye that needed more healing time. Did I look silly wearing a half pair of sunglasses? Most certainly. Did I have fewer headaches because the double vision was temporarily fixed? Yes, thankfully. Do I think you should give this method a try? If you can diminish the number of headaches you experience without taking a pain reliever that makes it worth the effort.
Stephanie
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1 ReactionDaphne, my tumor sounds very similar to yours and initially was affecting my eye sight but now is all is good. My surgery was in 1993. I am happy to report that you can and will live a long normal life. The feelings of anxiousness every time something doesn't seem right, will diminish in time, Be diligent in your medical appointment as they will provide you with comfort. Good luck and let me know if you have questions. As a person that has lived with this for a long time, i may be able to shed some light on things that pop up. Best of luck to you.
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1 ReactionHi Daphne, I appreciate your post is a long time ago but I would love to hear your story. I had pituitary Tumor removed on 14.12.23 and have felt worse every day since I had the surgery. Looking forward to hearing from you. Matt.
Hi @mattey24, I’m tagging @daphne2020 to make sure she sees your question about how she is doing. You might also appreciate reading comments by @jenirog70, who just had surgery in December and @barbiejk in this related discussion:
- Pituitary Tumor Surgery
https://connect.mayoclinic.org/discussion/pituitary-tumor-surgery/
Mattey, I’m sorry that you’re feeling worse since the surgery. In what way are you feeling bad? Have you talked with your surgeon about how you’re doing?
Hi Colleen, thank you for your response, really appreciate it. No I have not spoken to the surgeon. I am in the UK. We get transferred to our GP after surgery which really doesn't work. As for my symptoms,
1. Ache behind nose.
2. Numbness and pulsating in head.
3.Raised heart rate, now always around 100bpm was always around 75bpm before surgery.
4. Extreme burning sensation over face and neck. Yet not to touch and my temperature is normal.
5. Heart Palpations.
6. I eat because I should but very little appetite.
7. Weak with very little energy.
8. Pains in joints.
My pituitary Tumor was removed on 14.12.23. It was dormant so should have had minimal hormonal effect. Prior surgery I had bad headaches but that was all Now all this.
Thank you again for contacting me. I will be so pleased to get any advice.
Matt
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