Pituitary Adenoma

[kimis]

Hi everyone. I just got the results back from my MRI of my pituitary adenoma. Back in June I was suffering from a major headache.....to make a long story short....I had a 3mm tumor on my pituitary gland. Strangely enough my Dr said my headaches were not from this tumor, and the tumor would most likely be gone in a year.

My MRI showed my tumor is now up to 7mm....and my PCP is sending me to a neurosurgeon. WTF!!!!!!!!!!!!!!

Anyone have and similar stories for me? Good or bad.......whatever you got!

Thanks......this sucks

[kellylynn]

I did have a pituitary adenoma....about 2.5 mm, but it did go away about 9mos. later. I think it's a fairly common thing. So sorry that it's gotten larger! You may feel much better by having them go in and take it out. From what I remember reading the procedure is not as complicated or scary as neurosurgeon might sound.

Praying that all goes well!

[RollingAlong]

The Pituitary Network Association is an excellent source of info

www.pituitary.org

[kristenloeh]

So, how are things going with the tumor? Is it active? Have you started any hormone treatments and/or surgery? Just wondering because I was diagnosed with a 7mm pituitary tumor, and it is actively producing prolactin. I just started my hormone therapy to start hopefully shrinking the tumor and balancing out my prolactin levels. Hope all is well and that the docs did/are doing something to help get rid of the thing. They flippin suck. <3

[Kamma]

I feel for you, kristenloeh.  I was diagnosed with a 9 mm craniopharyngioma on the pituitary growing towards my optic chiasma a few years.  It hasn't disrupted the pituitary yet and the last MRI showed no new growth. 

 

I hope the hormone therapy is working good for you. 

[kristenloeh]

I feel for you, kristenloeh.  I was diagnosed with a 9 mm craniopharyngioma on the pituitary growing towards my optic chiasma a few years.  It hasn't disrupted the pituitary yet and the last MRI showed no new growth. 

 

I hope the hormone therapy is working good for you. 

 

Oh wow, I'm surprised they haven't done surgery to take yours out. It's only 1mm from being a macro AND going towards your optic chiasma. So, is it not active/producing extra hormones and that's why they haven't done anything about it?

[Kamma]

It's a very slow growing tumour.  The only problems I had was some years ago when after weaning my son off the breast at six months, I continued to produce milk for six additional years.  The doctors then did testing but everything else came back normal and I stopped producing the milk.  We didn't know then it was because of the tumour.

 

At this point they don't want to take out the tumour as it behaves a bit differently than  a pituitary adenoma in that it invades the tissue it's attached to instead of just sitting on top of it.  I'd lose my pitiutary function totally or the loss of eyesight.  At this point they say the symptoms are worse than the treatment.  Good enough for me! 

 

How are you finding the hormone replacement? 

[kristenloeh]

The Cabergoline is making me insanely ill. We are hoping my body will adjust to is after a month or so. I go in to get my blood work done to see if it's making any difference or not, and then an MRI in 3 months to see if it's doing it's job with shrinking the tumor. I also need to go and get my thyroid panels done because they are pretty sure I have hypothyroidism. I also have very low cortisol, so I'm on Hydracortisone for the rest of my left as well. *fingers crossed it all works and I can find some relief from these horrid migraines* 

[Kamma]

That is absolutely horrible that you have to go through all that on top of figuring out and adapting to the gluten free diet and lifestyle.  The migraines are insidious, aren't they?  One could just about go through anything in life if it wasn't accompanied by a huge whacking throbbing in the head. 

 

Once the tumour shrinks or it's removed, will your pituitary function normally?

[kristenloeh]

It can only function normally with hormone therapy the rest of my life. After going through daily migraines, kidney stone 6 different times and the Celiac, I think I can pretty much get through anything at this point.

[GottaSki]

It can only function normally with hormone therapy the rest of my life. After going through daily migraines, kidney stone 6 different times and the Celiac, I think I can pretty much get through anything at this point.

 

Yes, you can get through anything....the bad, tough and rotten -- along with the good and inspiring!  I am in awe of you...keep the faith.

[Kamma]

It can only function normally with hormone therapy the rest of my life. After going through daily migraines, kidney stone 6 different times and the Celiac, I think I can pretty much get through anything at this point.

 

Yes, you can.  You really can.  I know when I was diagnosed with my tumour and facing the consequences of an eventual surgery and what that would mean I really took a good long look at life and what it meant.  You come to accept a lot of things and try not to sweat too much over the small stuff.  You find the reserves to keep going and dig really hard to stay resolute and calm and try and keep finding something to be positive about.  "What ifs" get discarded as too heavy and you try and live very much for the present. 

 

Keep going, kristenleoh.  You have much bravery, chatzpa and strength.  Big hug to you.

 

Kamma

[kristenloeh]

You are both too kind, and Kamma, you seem even more strong and badass than I am

[Kamma]

Keep me posted on how you progress with the hormones and the state of the tumour.  You can pm me if you want. 

[kristenloeh]

I talked to my Endo today and they are putting me on a different medication for the tumor since the Cabergoline is making me really sick. I start it today and if it makes me sick as well, then the next step will probably be surgery.

[kristenloeh]

So, I started my new meds today and after about an hour, my heart was pounding so hard and fast I thought it was going to burst out of my chest, that's in addition to the same GI side effects as the other one. I'm going in today for my thyroid tests and am going to stop by my endo's to tell her and see what she says. Looks like surgery may very well be in the future for me. Shiza.

[Kamma]

Oh, that's too bad.  I know you must have been hoping that this drug would do the trick without the side effects.  The heart racing like mad must have been frightening.  Could it be an initial effect that will fade with time?

 

What did your endo say when you dropped in on her?

[kristenloeh]

Endo has officially taken me off of the meds. That side effect with my heart was a major one and could have killed me. So, in about 2 weeks, I will have a surgery consult. So I will be definitely be having surgery sometime in the near future. :-/ 

[GottaSki]

Oh Sweetie...I am sorry the new protocol failed.

 

Good thoughts starting right now.....your surgery consult with go well.  I know it.

 

Hugs!!!

[Kamma]

That's too bad.  I was rooting for the medication to work but we don't want you dropping dead of heart failure. 

Do you know which type of surgery method they will be using?  All of the reading that I have done says that the nasal method is the most common and leaves not a trace, scar or wound after. 

 

You must feel anxious.  Hang in there.  It's going to work out okay.  The surgery might just do the trick of total removal and no recurrence and all that will be further required is the hormone replacement therapy.

 

Great big hug.

 

Kamma

[kristenloeh]

That's too bad.  I was rooting for the medication to work but we don't want you dropping dead of heart failure. 

Do you know which type of surgery method they will be using?  All of the reading that I have done says that the nasal method is the most common and leaves not a trace, scar or wound after. 

 

You must feel anxious.  Hang in there.  It's going to work out okay.  The surgery might just do the trick of total removal and no recurrence and all that will be further required is the hormone replacement therapy.

 

Great big hug.

 

Kamma

 

We won't know how they will be going in until the consult in a couple of weeks. My tumor is behind my pituitary, so it's closer to my brain than normal ones, so it could be a possibility of them going through the top of my skull instead of going through my nose. I was getting used to the fact/hope that the meds were going to be what was going to work, so now being faced once again with the reality of surgery and it now being for certain that I'm going to have to have surgery has got me pretty scared. I've never had to have a serious surgery like this to where you have to be hospitalized. I've never have had to be actually hospitalized, so I guess I need to start planning for food for my stay since I've heard horror stories about the lack of gluten free options while at the hospital. >.<

[Kamma]

Yeah, it's a scary thought to think of someone going ito your brain.  I understand totally.  The comforting thought is that neurosurgeons are those at the very top of the medical field.  They don't pass 'em on in medical school if they can't do the job and do it impeccably.  If you get a choice in a neurosurgeon, ask to see how many of these particular types of surgerys they have performed. 

 

kristenloeh, you're going to get through this and the outcome will be positive.  When you start feeling the fear rise, try and hold onto this thought.  You never know, the worst part of the whole hospital experience might be the food they serve you. .

 

Don't worry about the 'what if's'.  Focus and act on what you have control over.  I think it's a great idea to figure out the food that you are going to need.  Make sure you buy some nice treats for yourself for after you wake up from the surgery.  Lord, I'd pay an arm and a leg for a whole bunch of gluten free licorice on this occasion even if I had to send to Switzerland for it.

 

This whole experience is frightening.  Feel the fear but also keep grounded.  You're strong, smart and capable of handling what comes after.  If you need comfort to help ease the jitters, shout it out here.  We'll support you.

 

Big hug,

Kamma

[kristenloeh]

I'm trying to stay strong about it all, but then once I'm blind sided with pain, at least a few times a day, it starts to get to me, A LOT. It seems like I cannot go a single day without crying and it's really getting to me. I sound like a whiny b*tch and I hate it, lol.

[Kamma]

No, sweetheart, you sound like a woman that is dealing with a helluva lot and trying to get through it.  Whiny b%$@#es moan about small things like breaking a nail, having streaks from their foam on suntan and not plucking their eye brows in time.  You are most assuredly not a whiny b%$@#.  Let that thought be banished from your head - you already have a lot going on in there.

 

Crying is a good thing to do.  It releases a lot.  I spent a year crying in the most inopportune situations and times.  One time I was at a farmer's market, getting my free run eggs.  I was late in coming and they had no more eggs.  I just started bawling and I mean bawling.  An old man stopped and thought something horrible had happened to me and I looked at him with tears running down my face and said, No, I can't have any eggs and just started bawling again.  He gave me a strange look and hurriedly went on his way.  Jeesh.  Things like that happened all the time.  People thought I was a crackpot.  I was never a 'crier' before but I sure made up for it in that year. 

 

 

What is the cause of the pain you are experiencing, kristenloeh?

[kristenloeh]

I cry SO randomly because the tumor is producing so much more prolactin that my body thinks I'm preggers, so I have ALL the side effects of being preggers without getting to have the baby! Also, since it's a prolactin producing tumor, it's causing daily, constant migraines and the only thing that helps is oxycodone and for a short time my medical marijuana. Unfortunately, I have no painkillers right now and can't get a new script for a while, so I'm kind of out of luck on the pain relief front.

 

Once I started bawling because my hair straightener wasn't working right. I yanked out of the wall, threw it across the house and flipped out. I'm usually not a crier either unless I'm insanely pissed or depressed. SO damn annoying!!