Anyone have a success story of pituitary tumor removal?

Hi @kswilliams, I'm tagging a few members like @astaingegerdm @daphne2020 @rubyjane @jnlbr9749 who have experience first hand as patients or caregivers with pituitary tumor surgery.

Has your surgeon outlined the risks and benefits of surgery specific to your situation? It must be hard to live with severe headaches.

@kswilliams
My daughter had pituitary surgery almost 14 years ago at UVA in Charlottesville in VA. She was 27 at the time and had been diagnosed with Cushing’s.
The surgery was successful. Her post surgery recovery was influenced by the sudden huge decrease in cortisol levels.
Since you have a non- functioning tumor hormone levels of any kind won’t be a factor.
She did not have any problems relating to surgery. She did have to look out for clear, watery nasal discharge since this could be leaking spinal fluid.
Your skull is not opened up/ the incision is in the middle inside your upper lip, through sinus pathways.
UVA had a dedicated pituitary center with a surgeon specializing in pituitary surgery.
Where are you being treated?
My most important recommendation is to be treated at a major university medical center by a surgeon specializing in pituitary surgery. Most neurosurgeons don’t have the experience.
Also, we usually recommend getting a second opinion.
Please let us know what decisions you make and how it works out.
Personally, I think you will do well- assuming you are treated at a major university hospital center by a pituitary dedicated surgical team.
Hoping for your headaches to vanish!

Good morning! I just had my pituitary tumor removed on December 8th at Mayo Rochester. Dr Van Gombel was my main surgeon. I had a migraine headache for over 5 months prior. Although they were not certain the headaches would go away…. I am now 4 days and counting with NO headache at all! The surgery was so successful for me. I was nauseous, dizzy, exhausted, migraine and smelling gasoline all constantly before surgery. Here it is Christmas and I feel better than I have in a very long time.
Feel free to contact me anytime with questions.

Hello,
I had a macro pituitary adenoma removed via transsphenoidal surgery (surgery through the nasal cavity to reach the tumor) 10 years ago. In my case, the tumor destroyed all pituitary function and caused visual deficits. The pituitary gland is small, but plays a huge role in the body-it controls all hormone functions. If there is damage to the gland, you will most likely need medications to mimic the function of the damaged area. (Adrenal/Cortisol. Thyroid, HGH/human growth hormone, ADH/fluid balance, and appropriate sex hormones). You will need these medications for life. It is a process to find the proper dose for each medication and it takes time. If you have damage to the pituitary gland, it is imperative that you find an Endocrinologist that SPECIALIZES in Pituitary Disorders. It is a rare condition and most endo doctors specialize in diabetes management and do not have experience in treating pituitary disorders. Have your labs indicated if you lost any pituitary functions?

Hi there!
Thank you so much for the follow up. I’ve only had mildly elevated prolactin a couple times. My adenoma has grown very very slow and is roughly 10 X 8 so we have decided to hold off on surgery at this time. It’s been confusing for sure. How are you doing now with the hormone replacement? I’m hoping you are feeling better?

Good morning, since my surgery I have been monitoring my blood weekly and my thyroid has stopped functioning. That is all. I am currently continuing to see my endocrinologist at Mayo Clinic. I feel like they are the best choice for me. I do understand your concerns. As I have them too. I am cued up for my adrenal gland surgery in a couple months. Another tumor has been found there. Darn DNA!