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...

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rosienessness 10/23/2012

Hiya I was wondering if anyone has had or is thinking about gammer knife radiation.

I have been suffering with med side effects since diagnosis 3 years ago (cab made me crazy norprolac makes me dizzy and sik)

As a lot of us i have relentlessly been researching other alternatives.

When I speak to my endo (I have had many alot of them useless) they always say surgery is too risky and i will almost certainly have damage as a result. But when I asked about Gammer knife he jus looked at me and said there was no point of doin it as the effects are not instantaneous and that they work over a number of years.

Isnt that what the meds do work over a number of years and some meds wont shrink the tumour they will jus control it?? and surely its better than the awful side effects of the meds? like they really make me feel like a different person, give me crazy mood swings and crippling depression (like suicidal thoughts) .........

So If anyone has any experiences or input I would be fascinated to hear it.........................

deleted_user 10/23/2012

If you go to an Interventional Radiologist...you'll get radiation.

If you go to a Neurosurgeon, you'll get surgery.

If you go to an Endocrinologist, you'll get medication.

Everyone plays to their strength and they're all going to tell you what works and also what keeps you coming back for more.

Personally, surgery or gamma knife...once it's done...there is no going back and putting it back, if something goes wrong.

deleted_user 10/24/2012

Hi Rosieness,
I also asked my Endo about Gamma knife and was told that the effects are not immediate - it takes years, just like you wrote. I've been searching for alternatives too. It's hard, since the pituitary is only the size of a bean & none of us want to damage it. I dont know the stats on damage from surgery, but the Neurosurgeon I consulted with said there's a much higher rate of the tumor growing back if it's surgically removed, so he advised to treat with meds first. Yee ha, we all know how fun they are! LOL My blood pressure was at an all time low yesterday (89/51) & my dr doesn't know why. I keep cutting my Cab dose & it's still kicking my butt. Let us know if you find anything please.

deleted_user 10/24/2012

Low blood pressure is a hallmark of Dopaminergics.

The medication binds to the 5HT2B Dopamine receptors, throughout the body.

In my case, it bound so tightly to the vagus nerve that I simply didn't get good signals from my brain to my adrenal glands atop my kidneys. As a result, I didn't get good homeostatic responses when my blood pressure needed to elevate for exertion or even simply doing things like bending over to pick up something off the floor.

My blood pressure got so low that the doctors thought I was in congestive heart failure and they performed a cardiac catherization. They found no problems with my heart...and my blood pressure came up to more normal levels with a reduction in the medication.

Iris2012 10/25/2012

My understanding is that gamma knife can be used to stop a tumor from growing, but is not often used to actually eliminate the tumor. I had my tumor surgically removed last month, and there was a tiny piece (2%) that the surgeon couldn't safely remove. I need to monitor my prolactin levels to see if they start going up again, which is a sign that the tumor is growing. If so, the surgeon said they could use gamma knife to prevent it from growing more.

deleted_user 10/25/2012

Thanks Iris2012 for sharing what your Dr said. How large was your tumor before surgery? I'm looking forward to hearing how you feel after recovering, etc.. And thanks Tigertales for the low blood pressure info and confirmation. I expressed to my Endo that I think it's the medication but in her defense, my blood pressure was also low just before my diagnosis so it's a bit of a mystery. However, I definitely think the med has made it worse. Would the tumor itself cause low blood pressure? Mine is 1.3cm. My Dr doesn't think so unless it's affecting my cortisol, which has been testing fine so far.

Iris2012 10/26/2012

Thanks K2012Hi. My tumor was about 5 mm before surgery, and everything has gone really smoothly, thankfully. I went back to work this week and am feeling overall pretty good, tho still get mild headaches if I overexert myself physically. They removed 98% of my tumor and my prolactin levels went down immediately, and today I got my period! First visit from Aunt Flo in about a year. Cramps never felt so good :) I have my post-op appt next week, and will hopefully learn a little more. So far so good---I am really thankful.

deleted_user 10/26/2012

That's AWESOME Iris2012!! It's great to hear some good news from one of our "groupies!" 98% without any damage is a good thing. It's amazing you got your period back so quick. I've been over 1 year without it & over 3 months with prolactin level normalized & still nothing. Where did you go and who was your Neurosurgeon? I'm happy you're having such good results. Yeah!!

Iris2012 10/26/2012

Thanks!!!! I was really really excited today. I'm trying to keep my expectations in check...one period is certainly not enough to determine whether my cycles are "normal" again, or whether I'm definitely ovulating or can get pregnant --but still, it's certainly a positive sign!! I went to UCSF and have been really impressed with the team there. I've had a number of not-so-great doctors over the years, and then switched to UCSF in Jan, and was quite impressed with their endocrinologist (and, later, their surgeon). I'd recommend their pituitary center to anyone for whom it's geographicaly feasible. Feel free to message me if you'd like additional info.

Iris2012 10/26/2012

PS My endo told me that it can take 6 mo's or more for periods to return after prolactin is normalized....but some women take much longer (up to a year), and some women take much less. I feel lucky to be on the nearer-term of that spectrum, but it doesn't sound like it's unusual that you've been 3 months with normal prolactin and no periods. Hopefully it will just be a little bit more time for you too. I'm crossing my fingers for you!
Btw, I was looking into acupuncture b/c supposedly it can help regulate women's cycles. Haven't tried it, but have heard good things.

deleted_user 10/27/2012

Someone on here shared with me that they were using Chinese herbs and got therr prolactin levels to a almost normal range

deleted_user 10/28/2012

HI Iris2012!
Thanks for rooting for me!! I really want it to come back. I'm glad you brought up acupuncture because I keep meaning to do that. I've heard great things about it too.

Hi Mel5028, that's really great news what you shared. Do you know which thread that's on or what herbs they were taking? I actually went to a holistic doctor who's also an expert in Chinese herbs but he didn't recommend anything even though I asked many times. He said the pituitary is a hard spot to reach due to the blood brain barrier. I'll try some Chinese herbs... I believe they can work.

deleted_user 10/28/2012

Heck at this point I'll try most anything... LOL!!! ... I feel awful.

Iris2012 10/28/2012

I think Chinese herbs often go hand-in-hand with acupuncture, so your acupunturist might recommend some. I haven't personally done it, but I've heard good things from folks who've done it for a variety of "female" and hormonal issues.

I'm personally a big believer in "mind over matter" too, and that meditation and visualization can help put your body right. Maybe that's the "California" in me coming out :) During my recovery after surgery, I downloaded a bunch of guided meditations from Amazon and did them daily. They're about 99 cents each and there are a TON of options, including some specifically geared toward women. Not everyone is a fan, but I think it helped me.

Good luck and pls keep us posted!

deleted_user 10/30/2012

Thanks Iris2012! I hear you. I believe meditation is extremely beneficial too. I've done a few visualizations on my tumor but lately I haven't been consistent... got too bogged down in doctors appt's, paperwork, etc.. Now I want to get my butt in gear & start meditating more consistently.

I will keep you posted. I hope your recovery continues to go great for you!

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