Macroadenoma Please Help

[nikki_222]

A little background on myself, turning 36 this month female & I was trying to conceive my second child first child is 17 years old. I have been pregnant 4 previous times all resulting in miscarriage, last miscarriage was in 2001 at 16 weeks.

I have had irregular periods for years but was overweight my doctor told me to lose weight and they should come back, I lost over 100 pounds just over 2 years ago and have maintained at about 150 pounds since then (I have recently put about 20 pounds back on) My periods never came back normally and after 2 years of trying to conceive I was referred to a gyno who did blood tests back in April my prolactin was just a little elevated 35.0 they say normal is <25 ug/l, blood test repeated in May 38.0, July 57.6 beginning of Aug 45.5 end of Aug 64.1 the gyno said I probably have a small tumour and not to worry and put me on Clomid no results from the Clomid so I got referred to a fertility doctor and he ordered a MRI Sep 20/12 here are the findings:

A normal appearing pituitary gland is not visualized. There is a solid sellar and suprasellar mass, which measures 22 x 14 x 20 mm in dimension. There is associated expansion of the sella, without invasion into the cavernous sinus. The mass is abutting the optic chiasm, with mild splaying of the optic nerves. The Mass is characterized by intermediate T1 signal and intermediate to high T2 signal. No obvious calcified or large cystic components are identified. The mass does enhance fairly homogeneously.

Parenchymal volume and signal is otherwise within normal limits. There is no hydrocephalus, herniation or extra-axial collection. The major intracranial vessels demonstrate normal expected flow voids.
Findings consistent with a pituitary macroadenoma.

So the fertility doctor referred me to a endocrinologist I saw her in middle of Oct and she said she believes I have a non-functioning tumour and did not put me on medication. She said medication could make me fertile and she does not want to risk pregnancy because it can be dangerous with the size of the tumour. She also said medication does not usually work on non-functioning tumours. She has referred me to a neuro surgeon who I have not seen yet because he is now referring me to a neuro-  ophthalmologist and a ear nose throat doctor? More blood tests were done and they came back normal except for Sodium & Chloride which were high, prolactin was not tested again.
Questions: What does all of this mean? How dangerous is this? Will I be able to have a baby after surgery? How dangerous is surgery? What about quality of life after? I do have mild symptoms: fatigue, constant headache, no menstrual cycle, very dry hair, always cold. Last but not least... Is there anybody that can refer a good doctor and surgeon in Vancouver BC, Canada? I have been referred to Dr. Gooderman at Vancouver General, but I cannot find any info on him.

Sorry For such a long post, but I am very nervous and anyone I try to talk to about this makes it like it is no big deal. Again Thank you in advance for you responses!

[rumpled]

That is NOT normal. Most people post pituitary surgery are placed on hydrocortisone for a temporary time. This helps the pituitary heal and makes sure that if any function is lost, you don't die - to be blunt. If you feel nauseous at all, make sure you contact the doctor.

Often thyroid is needed to be replaced as well.

As for the stuffy nose - some surgeons will allow saline nose spray. If your doc does not allow that - a hot bowl of salty water with a towel - hang head over bowl, tent towel over head and steam your nose open as often as you need. I also found a humidifier helped during sleep.

You should get smell and taste back soon - weird - I forgot about that - but a lot of us lose that it will gradually come back.

Get a copy of  your pathology and surgical reports - that should give you an idea about surgery. Odd about them now knowing about your tumor I think - they should know if they got it or not?

[nikki_222]

Hi All, Thanks for all your reply's. A little update: I had surgery on Dec 7, 2012, I stayed in the hospital for 4 days and for the first 2 I felt like death severe headache and sinus pain. Some days I feel great and then today I feel overly tired and slept most of the day hence why I am up at 3am. They say the surgery went well but they are not sure if all the tumour was removed and will not know until my mri which will be in about a month? they say a did not have a leak and they were able to leave my pituitary gland so they think it should function normally.
I do not go for any follow up until Jan and I have not been placed on any medications is this normal? I still have the odd headaches and I feel tired but it is only 10 days since the operation. I also am so stuffed up in my one nostril and cannot breath out of it, what can I do for that? Also one more complaint I cannot smell or taste anything, how long does it take before I get my taste buds back?  
Thanks for you responses Nikki

[rumpled]

I hope that the doc checked all your hormones and not just prolactin - I say that as some of the other hormones can raise prolactin (even thyroid) so it pays to get copies of everything and double check that all has been done.

Surgical skill is very important in outcome. I have a couple of buddies in Canada who had pituitary tumors - some even came to the US for surgery.

Ask a lot of questions and feel good about the surgery and surgeon - if all goes well, it should be a breeze. I came out of mine - I think I had a tylenol and that was it.

[KenHatch]

My Neuro was not a specialist in Pituitary but he has done a lot of them. My tumor was a 3mm but had started growing upward and was just getting to the optic nerve not touching yet. That is why they decided to go ahead and take it out. Surgery was 4 hours and they went thru my nose. They did get it all. Just had my first postop MRI. Will still have to have one every year. I had surgery on Friday morning. Spent 2 days in ICU 1 day in a regular room and went home Monday. They give you Cortisol after the operation, and you will take that until they can tell if you are making your own. Several weeks. I think they had me on too high a dose. I did not sleep,at all, in the hospital and would only get sleepy 1-2 hours before the next dose for 2 weeks. The only thing I am on now is Testosterone. That is the only thing I did not produce. Headaches lasted 10 weeks for me. Taste and smell came back afew weeks after that. I have a Great job where I can come and go as I please. That is why I could come back so early. I pray your surgery goes as easy as mine. I NEVER had any pain from the surgery. It was the most boring vacation I had.

[AngeloGR]

Hi this is Angelo from Athens Greece,
I had an operation 4 years ago for an adenoma removal from the pituitary gland, mine was 3mm.
Yes, the surgeon was specialized in pit tumours, it wasnt a reqular neurosurgeon.
I found out about the adenoma from my eye doctor, I started having pain in my left eye and tears used to came out for no reason.
He examine me and found nothing so he told me to go and have an MRI, and I fount out about the adenoma.
Also I was not feeling so good, one time I was feeling cold and then feeling warm and having a lot of headik, so I did blood test and found out that most hormone levels were our of their normal levels. So before the operation, one month or so started taking T1 and T2 medisines.
They didnt remove all the adenoma but they removed most of it.
After the operation, (it lasted 4-5 hours), I continue taking T1 and T2 medication until I did a new blood test a month from the operation which came out very good, so they reduse the amount of T1, T2 med and also an MRI.
Later on I guss it was 2 months from the operation I did a new blood test and all the hormone levels were back to normal so I stop taking any madication.
I stayed in the hospital for 2 weeks and out of work for 3 MONTHS.
You dont sapose to do nothing after the operation for about a month, not lifting havy wates, not bending over to pick something from the floor.
After the operation you will have a litle headik but day after day will go away.
Dont forger to tell you that my neurosurgeon went in throu under the uper lip.
After the operation and for at least 2 years I had not any feeling of the area of my uper lip and also not any feeling of my upper two front teeth.
Now I dont have not any headiks at all not taking any madication and all the hormone levels at there nolmal levels.
I hope that I help you and feel free to tell me your news about the operation.
Good luck and take care.
Angelo

[nikki_222]

Hi, Thanks for your reply! I am checking out the other things that you sent to me. I have an appointment set up now with a neurosurgeon Nov 21 got it today.

I have a few questions: Did you go to a surgeon that specialized in pit tumours or just a regular neurosurgeon? If you don't mind me asking how big was your tumour and was it pressing on your optic nerves? Did they remove it all? Are you on meds? How long was the surgery? And how long was your hospital stay?  

Only 12 days off of work, I was hoping for longer.. lol. Anyways thank-you for your reply. I have been doing so much on-line research I am not sure if my head hurts from that or it is actually the tumour that is making it hurt..lol
Take Care Nikki

[KenHatch]

Hi nikki_222, I am 15 weeks post surgery. I had the same as you. Non-functioning tumor. They tried the meds on me to see if it would srink. Just a waste of time. Don't worry about surgery. It is a breeze !!! Life after. My headaches lasted 10 weeks and taste and smell just came back last week fully. Read all you can. It is not near as bad as you are thinking it is. I went back to work 12 days after. Only stayed off that long because the wife tied me to my chair. I am going to send you a PM about some other stuff. Ask all the questions you want.