Prolactinoma Support Group
A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...
This time a week ago, I was in the recovery room at the hospital. It feels great to hit the 1-week milestone! My hospital stay feels like ages ago; on the other hand, I can't believe it's already been a week.
Feeling better every day. Well, mostly. It was beautiful weather on Sunday, and I felt really good, so I walked around a lot, but I think I overdid it. Monday, I was WIPED. I'm used to being pretty active, so was surprised how some walking around could really take it out of me. I pretty much laid on the couch and slept all day and all night, but feel much better now.
I did have a little freak out, fearing I was getting a spinal fluid leak (CSF), which is a really bad complication to get. I was getting a watery discharge from my nose, which is one of the symptoms. I also have mild allergies, so sometimes I get a little runny nose anyway, and I couldn't tell if my runny nose was allergies or CSF leakage. I called the doc and they had me come in, and confirmed that it is NOT CSF leakage. Whew! I feel a little like I was over-reacting now, but I think it was better to be safe than sorry.
Also got the results of my prolactin back: 3.7 Whoo hoo! My prolactin hasn't been below about 50 since this all started almost 15 years ago. A prolactin level of 0 was the ideal, but since there's a tiny piece of tumor left, I thought that might be too much to hope for. Still, considering anything
Feeling better every day. Well, mostly. It was beautiful weather on Sunday, and I felt really good, so I walked around a lot, but I think I overdid it. Monday, I was WIPED. I'm used to being pretty active, so was surprised how some walking around could really take it out of me. I pretty much laid on the couch and slept all day and all night, but feel much better now.
I did have a little freak out, fearing I was getting a spinal fluid leak (CSF), which is a really bad complication to get. I was getting a watery discharge from my nose, which is one of the symptoms. I also have mild allergies, so sometimes I get a little runny nose anyway, and I couldn't tell if my runny nose was allergies or CSF leakage. I called the doc and they had me come in, and confirmed that it is NOT CSF leakage. Whew! I feel a little like I was over-reacting now, but I think it was better to be safe than sorry.
Also got the results of my prolactin back: 3.7 Whoo hoo! My prolactin hasn't been below about 50 since this all started almost 15 years ago. A prolactin level of 0 was the ideal, but since there's a tiny piece of tumor left, I thought that might be too much to hope for. Still, considering anything
I had it done at UCSF and found their medical team there to be top notch. My initial discussion with the surgeon was really informative. He looked at my MRI and discussed the characteristics that affected my risks. E.g. due to the small size and location of the tumor, he felt my risks were low. Also, the fact that my prolactin levels were
crystals-i am experiencing major depression and anxiety and fatigue as well. my doctor also said it was unrelated. i've done some research, though, and it seems that the tumor could possibly be putting pressure on the pituitary gland and causing hypopituitarianism. see if your doctor will check your ACTH. it could be low, and not sending the message to your adrenal glands to produce cortisol (have your cortisol levels checked as well). Cortisol is your fight or flight hormone. its what helps you deal with stress, or not. I had my cortisol levels checked a while back and they were really low. but the doctors always think it is due to stress. like, "which came first, the chicken or the egg?" I just convinced my endo yesterday to check my ACTH. He did so very reluctantly and got defensive as if I had accused him of missing something. I think i was very nice in the way i asked him about it, but if the shoe fits...!
Good luck with your appointment and keep us updated.
If you go to a Neurosurgeon....
Everyone skews the facts toward their specialty and vocation.
Ultimately, it's up to the patient/consumer to decide what's best for them, I think. There are consequences, hopefully more good than bad, in any endeavor like this.
My hope is that, for whatever you do, it yields the BEST result. I have a good friend that is a world-reknown Neurosurgeon...now retired and I asked him for his opinion. When I told him about my situation...he asked, "You ARE going to take medication for this, aren't you?" Enough said...but your mileage may differ.
I was able to tolerate the side effects of the meds, so if the meds had worked for me, I probably wouldn't have had surgery. If I hadn't been able to see a world-class surgeon who specializes in pituitary surgery, I might not have done it. If I had reason to believe my risk factors were higher than they were, I might not have done it.
There have been a lot of advances in the surgery over the past 5-10 years, risk factors have gone down in specialized centers, success rates up, etc. There are always risks with any surgery, but there is a trade off to NOT having surgery when it affects your health or quality of life. I wasn't willing to accept the possibility of not ever having children, or risks of osteoporosis when I'm older, when the risks of the surgery seemed so low in my particular situation. That said, I wouldn't necessarily "advocate" surgery for others...it really depends on individual situations and risk factors. If you're doing great on the meds, maybe there's no need to have surgery. But I also encourage people to not categorily dismiss surgery if all signs seem to point to it being the "best" option. I talked to a lot of doctors and did a ton of research to get a sense of what all my options meant for me, and landed on surgery being the best one for me. I'm sure it's not the best option for some people, though.
Just wanted to say Congrats on your surgery & that you're doing well. I hope you get lots of rest & give your body time to heal before doing oo much. Surgery is a big decision & on my really bad days I feel like I just want to have my tumor takn out too! Please let us know how the rest of your recovery goes & how you feel as time goes on. Take care :)