Prolactinoma Support Group

I will be honest. I had the surgery and was in the hospital for 3 days. That is the industry standard as I understand it. My surgeon told me that some will d/c sooner but that a really good neurosurgeon will want to monitor the person longer than a day. I was not back to work for 4 weeks. I was weak and very tired. But, my hormones would not regulate. After trials and switching endos, I am happy to report that I am fine now. But, I just found this out last week. I had the surgery in December. Overall thought, I am glad I had the surgery. I would not recommend it without trying the meds thought. I could not tolerate Bromocriptine and the tumor was found to be bleeding. It was the right decision at the time. Yet, it is tough decision and not a first choice in my opinion. Good luck

I had the surgery as well. You won't go back to work for 4 weeks at least, not 3 1/2 days!!! Maybe stay in the hospital for three days. I stayed in for almost five days as I had a spinal fluid leak then a spout of diabetes insipidous as a temporary result of the surgery.

I had the surgery in December, too. My tumor has not returned. I have had the surgery twice, and the first was hell. Bad surgeon!! Research your surgeon.

Good luck if you do have the surgery. The odds of it returning are high. For me it was only a 40% chance my second surgery would be successful.

However, I would do it again because pills did not work and it was doubling in size within a couple months. Surgery is a last resort. Extremely dangerous, but totally worth it if it works!

:)

We have had people, on this forum, that had the Pituitary destroyed as a result of the surgery. In greater than half the cases, the tumor grows back. In 40% of the cases, with the tumor removed, the hyperprolactinemia remains. For me, if the tumor is stable and the prolactin can be regulated with meds; I am going to leave it alone. The Neurosurgeon I consulted says that, occasionally, the tumors just burn out.

Your friend recovered incredibly fast. I had to have the surgery too because my tumor continued to grow with the meds and was approaching my optic nerve. Two neuro's and an neuro-opthamoligist told me to have the procedure. I was somewhat relieved for the surgery decision to be out of my hands because I was always thinking about this huge decision looming over my head. I didn't feel that great with the meds but the idea of neurosurgery was very scary so when the doctors basically said it was something I needed to do, I was ready for it. I was in the hospital for 4 days. I was not back to work for 4 weeks but the standard recovery is 6 weeks. I was surprised at how tired and weak I was for a few weeks. I had my surgery in November and started to really feel great by spring. Looking back, it was the best thing that I could have done for myself. My surgeon told me that there was a 10% chance that it could come back and that I needed MRIs for the next 5 years. So far, so good. I am free of medication and lots of doctor appointments. I would definitely do it again. Good luck.

You mention that the surgeon stated 'these things just keep growing'. I am assuming your friend had a macroadenoma (>10mm). Statistically, only about 7% of microadenomas grow into macros. If you have a macro, however, they will continue to grow at a slow pace.

Your friend's story is remarkable. My surgeon is more conservative than most and would not even consider discharging me from hospital before 7 days after confirming that my urine discharge had returned to normal. It is now another week later, and I am not even strong enough to visit the supermarket. I agree that four weeks are more realistic.

At this stage I am still ambiguous as to whether the surgery was a good idea or not. Thus far the fear of complications after the surgery is by far the worst part of it. At least it is for me.

I had the surgery in december and I was scared,,,very very scared. I was in the hospital for 10 days, after the surgery had terrible headaches for two weeks and I went back to work 6 weeks later......That is true you need to research your surgeon make sure you have the best doctor possible. I live in the USA, originally from Europe and I went back to Europe for the surgery because I trust the system and the doctors focusing on you more......now I feel better then ever, the tumor is gone the pitiutary gland is "untouched". It is a hard decision to make to have the surgery or not and it is very dangerous. For me ...was my chance to get my fertility back. It has been three month I still don't have my period yet, but by time and with patient hopefully everything will work out. Good luck!

I had my surgery just over 3 weeks ago. I had a microadenoma that was unresponsive to dopamine agonists. I had my surgery done at the Mayo Clinic. The surgery was clean and has healed well with no spinal fluid leak, no swelling or whatnot.
The only innitial discomfort was from my nose being all congested. Mouth breathing sucks!!!!

They only kept me overnight there. However I wish that they would have at least required me to remain in the area for follow up for at least a week. But after all of my blood/urine tests came back good they said that I could head back home to Denver. My cortisol levels were on the higher end at 35, but at least not low. Sodium was normal, and my prolactin had gone down to 3 from 90 the day before!

The week following the surgery I felt fine, except for annoying nasal discomfort. I felt only a little tired and attributed it to not sleeping well and whatever mysterious hormone re-balancing was going one up there.

However exactly a week after surgery, I started to feel confused, weak and generally sick. I went to the ER here in Denver, and they found out that I had low sodium levels (hyponatremia) and low cortisol levels as well. I was hospitalised for 5 days. The hospital did not have an endocrinologist and my local one felt she was not qualified to treat this kind of condition as she is a reproductive endocrinologist. So I had some kidney doctors fumbling arround trying to figure it out for a couple of days. They put me on IV fluids which only made me sicker. Then they figured out how to get my sodium levels up safely. They can't do it too fast or you could have a stroke.
Anyway, I am on Cortisol replacement hopefully temporarily. Sometimes when you have pituitary surgery, the pituitary gland produces less ACTH which stimulates less cortisol from the adrenals, which in turn can cause overproduction of vassopressin (ADH) in the pituitary, which sometimes leads to hyponatremia. Hyponatremia can happen regardless of cortisol levels also.

I returned to work this week (3 weeks after). I am definately feeling much better and strong. I am a dog walker and it feels good to get out and have some exercise but I am taking it easy for precaution and sticking to the little dogs for a week or so.

So, I would recommend to anyone who is planing on having surgery to insist on either staying more than a day at the hospital or at least request follow up within a week of the surgery with the surgeon and remain in the area if you traveled for the surgery. I wish I had stuck arround for a while. I feel that the peope at Mayo would have been able to more compitentlly treat these complications than the local hospital did. I feel that my surgeon did a good job, but was way too hasty in discharging me so quickly!