promg:
Yes, I am definately going through with the surgery because its really hard to live feeling horrible all the time. I ABSOLUTELY cannot take the medicine so surgery is about the only thing I have left to do.
I almost got to a point, before surgery was approved, that l was gonna live like this for the rest of my life, and so do get to a point where you kind of get used to feeling like this all the time so you really dont actually know what its like to feel "normal".
Everyone who has had the surgery keeps saying that they feel better and better day by day, and that is what I hope for.....

I've about surrendered to the idea of surgery, myself.

This has been a life trial and I know my other options have about run out.

The illness is bad, the medication awful and I just can't stand not having my life.

tigertales, if you dont mind me asking, is there any reason you havent had the surgery? I have read many of your posts and my heart goes out to you. You seem to have dealt with this for quite awhile now and I was just wondering if you had been told you werent a candidate or maybe if you live outside the US and have limited access to the surgery... I hope I am not prodding.

Tigertales: Ive only suffered with this illness for about four years, the worst of it the last two. I cant imagine feeling like this for as long as you have. I would be banananananananans! I think you should really start looking into the surgery.......Just Sayin

Thank you, everyone.

I am a good candidate for the surgery...at least, three years ago, I was. I'm having my first MRI in three years on the 21st and my surgical consult on the 28th.

I ironed out the details with my insurance and am about ready to get going.

My greatest hesitancy has been over complications...CSF leaks, hemorrage, destruction of the gland...etc. I have a reputable Neurosurgeon lined up and he's experienced. Sure, I'd like to be at Swedish or UCSF or Pittsburgh...but, I don't think it makes a lot of difference when I have a guy with "good hands" so I've been told.

The surgery does not scare me...it's the complications...but, I'm an 80 percent candidate, so the odds are in my favor.

I've just come off medication, again, and have spent the better part of the past 5 days in a low level psychosis. Cabergoline is just awful and it just hangs on. Then, there's the illness itself.

My adenoma is a smaller mass but it's highly productive of Prolactin. I've had symptoms since the mid-80's with depression, then anxiety starting in a palatable fashion in 1993. I spent 15 days in the hospital with depression and then again another 4 on top of that. They ended up thinking I had bad tonsils and I had a tonsillectomy at age 33...really rough.

Well, I got better...then I got worse. Back and forth, over the years and I finally got a proper diagnosis 6 years ago this next week. I started medication at that time, got a little better, but I've practically lost my mind several times over these past 6 years.

I've had compulsive behaviors and strange, strange appetites for things since being on the medication. If you only knew my mind...and how it's hard to string together cohesive thoughts.

Some things run on autopilot, but a lot of things take some real mental effort to accomplish...because of the way the drug interferes with your thought processes and emotions.

You lose track of time and sometimes your place in space. I know...it's hard to describe the feeling. This situation takes you away from yourself. You really want someone to pull you up close and tight and just stay with you...but, people don't understand at all.

They know something is wrong and they're fearful...I get that.

Unless you've not just walked...but suffered...in someone else's shoes...you haven't a chance at developing any fresh empathy toward those that hurt in ways that may be impossible to describe.

But, people will say, "You don't look sick" and you realize they've got nothing to offer.

The docs don't understand, either. The last doc I saw gave me a totally blank stare as I described things to him. He wrote me a script for some more medication and pointed me toward the door.

Some docs are just so typical. Say tigertales, I was wondering the reason behind the tonsils. At the height of your symptoms did you have horrible chocking sensations?

Bugsy, I was run down a lot and one of my doctors tested me for Mononucleosis...which proved to be negative.

I had pustules on my tonsils and ran a low-grade fever. They would give me a shot of Biaxin, the tonsils would clear up for two days, then the pustules would reappear and I'd feel run way down again.

My theory is that the Prolactinoma was at work, even then. My current docs all say about the same thing. Too bad I wasn't tested for Prolactin levels then...I could have started medication and may wiped out the tumor when it was small. Who knows??

I have had choking sensations...yes. I've also developed some sleep apnea, but I sleep on my stomach most of the time, now.

A few years after my tonsils were removed...this scalp psoriasis showed up.

I want to see if the Psoriasis goes away when the tumor is removed. I'm thinking my autoimmune system gets involved with the elevated Prolactin levels and/or the tumor. I'll definitely keep you posted as to any changes or, hopefully, improvements.

Hey again Tigertales:
Im glad to see that you are getting things taken care of. There is no reason that a person should suffer like the way we suffer. I know that some people dont have any symptoms and some people like us have almost every symptom and side effect in the book. I know that if I wouldve stayed on cabergoline for that long Ive would have went crazy or ripped someones face of.
My doctors still dont think that my symptoms are from the tumor, but I have a gut feeling that they are and l told them that if I feel much better after surgery l want to go in the record books for sure.
I ended up in a mental facility for severe anxiety due to this thing and later developed depression. lt got to the point that l couldnt go anywhere because l felt so sick all the time, and if l did go somewhere l was afraid l was going to feel sick. This illness has ruined and wasted alot of days and nights for me. Especially good times with family and friends. I know how you feel.
I personally think that we are at the worse side of the spectrum for this illness, and doctors think that if its not in a text book, then it doesnt exist.....

Crystal - I think you're onto something! I started the pill (Dianette also) when I was 15 and have now been on it for 17 years! I swapped brand name to Cilest but it's the same kind of pill.

I've been getting the same response to Cabergoline. At first I felt better but when I doubled the dose after a month I felt SO depressed. It was very, very dark at the weekend. I spoke to a pituitary nurse yesterday and she said to return to original 1/2 tablet per week dose until I see the endo at end of January (I'm in UK).

The pituitary nurse (freephone number available to anyone in UK) also told me about another drug quinagolide which could be a possibility as it doesn't cause depression (just sickness and headaches urgh) unlike bromo. My endo didn't mention this drug though so I don't know if it's available.

A weird thing is that I read somewhere that the pill can be used to control a prolactinoma and that it's used as treatment for some people. That's the internet though, it could be inaccurate.

My doctor and my endo both told me I could go back on the pill while taking Cabergoline. Within a day of doing so I felt AWFUL. Very ill and depressed. I came off it after five days of waiting for it to settle down and these symptoms abated until I doubled my cabergoline dose.

One question for people - have you noticed alcohol affecting the sickness and depression at all?

Thanks so much for this thread!

Hey Catrianna:
I also tried another birth control pill because the doctors thought that I might have had PCOS(polycystic ovarian syndrome). I took one pill and was suicidal and felt really sick. I stopped after the first day and felt better after that. My gyno checked my prolactin and said that if you have elevated prolactin or a prolactinoma it can look like you have PCOS but not actually have it. I really do think that birth control pills caused all my problems. I think that there should be more warnings on birth control pills.
I also do believe that prolactinoma can go one of two ways, like i said earlier in this thread, and I also think the same thing about birth control and the medication to treat prolactinomas.
I just wish that I was one of the lucky ones that could take the meds with no problems, but then again we really dont know what this med can do to us in the long term.

Sorry Catrianna
I forget to mention that I havent drank since I was 17, but I do know that there are warnings on most psychotropic drugs about drinking alcohol and having reactions, I take Prozac and the warning is on that med.
So l wouldnt be surprised if you cant drink, BUT l also know that drinking also causes your dopamine to rise so its as if you are getting to much dopamine at once while taking the cabergoline.
While I was taking cabergoline I also was smoking cigarettes and when I would smoke to many, I would feel really sick. I have to quit smoking now because of the surgery, but I will bet that my prolactin will go up because I not getting the extra dopamine form smoking.
Thats is why some people have addiction because they are addicted to the dopamine rush from what they are doing not the actual drug etc. Just an example.....

Ahhh that's really useful thanks. I'm going to tell my two doctors that the pill should NOT be taken at the same time as Cabergoline.

Could we write to all the females on here and see how many were on the pill for a good length of time and of those how many were on Cilest/Dianette. Maybe it's this kind of pill specifically, it seems no coincedence to me that all three women that have come forward were on the same pill. If the pill did cause this, something should be done. I was beginning to reason it was mobile phone that caused the tumour (they've proved they do now). The other possibility I've toyed with is fluoride so I have a natural toothpaste now.

Hi Crystals83,
Thank you so much for sharing. Your comments are extremely helpful and encouraging. All the best with your surgery.
The last MRI you had....what was the size of the tumor?

Hi catrianna i agree that it is so interesting that we were all on dianette and have this tumour. I am also really interested in what you said about it being proven that mobile phones cause these tumours? Is there a site with this info? I am in the UK also.

Hello, it doesn't say that it causes our kind of tumours, just tumours in general. If you google mobile phones and brain cancer you'll find that there's more evidence, particularly this benign tumour where the Italian courts rules on his side.

http://www.telegraph.co.uk/health/9619514/Mobile-phones-can-cause-brain-tumours-court-rules..html

One of the comments says this: "about 5 years ago on the .gov.uk website there used to be information regarding safe use of mobile phones. never hold the phone against your head for longer than 5 minutes at a time, never wear the phone(switched on or off)closer than 3cms to your body, never EVER let children under 15 use a mobile phone, never sleep with a mobile phone within 3 metres of your head etc etc. the person that used to oversee mobile phone safety regulation also happened to be a executive director for orange also...but all this info has since vanished from the .gov website for at least 3 years now...strange no?"