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Avatar universal

Pituitary tumor

I have been reading everyone's post on micro tumors...believe me...I have been miserable for quite a few years.  My tumor was also found by incidental symptoms that sent me to have an MRI. I have been going to Emory, and of course, they are like everyone else, anything less than 1cm shouldn't cause the symptoms that I have...but my gut feeling is that it is the root of all my problems.  My tumor is 7mm.  I also seem to have some sort of B-12 anemia, which is not helping matters.  I would like to confirm to everyone, that everyone is different and their symptoms and tolerances are different.  If you feel like the tumor should be removed, then by all means, have it removed.  I am.  I know many of posts here are last year, but hopefully someone will read this & realize they are not alone in the battle.  Go to pituitary foundation & read up.  Even a 1mm tumor can be debilitating.  
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Avatar universal
Dear there, i had a lesion in my brain exactly as you describe! Its shocking to me to read what you wrote! I also ha e b12 deficincy and am struggling with some sort of depression! Cant take anti depression so it does not affect my lesion but am 100% sure that the high level prolactin is the reason, am so happy you found the courage and the time to post your question, someone read it after 10 yrs
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Avatar universal
Yeah, so sad what you have to fight for treatment when you are so sick :S
I will do some research on surgery and see what the neuroendo has in mind :)
This forum has helped me so much.. It's amazing :)
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Avatar universal
You have to make the right decision for you - which may be the surgery! You have to research it and look into the surgeon and decide what is right for your life and you - no one should make the decision but you.

Yes, for such a little gland, it packs a wallop. Too bad most docs seem to judge it on its size and seem to think anything on it or around it is insignificant when it rules almost everything.
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Avatar universal
Thank you for the information :)
I will deffinately try any meds the neuroendo will give me. The hormon system is just so difficult to understand. The pituitary gland is such a little gland and can cause so many problems :S unbelievable

Hope you are alright :D
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Avatar universal
Re not seeing tumor - Totally agree! I had a tumor hide to 12 years only to show up in a dynamic scan! I think they are great!

As for surgery - there are risks... if you are not well controlled on meds, then you can go for it, but alas, odds are higher to lose other hormones, in particular thyroid (which I think you already take and later, growth hormone.

I had two tumors, both sides, so I got zapped on both sides - but until this year I was ok and now my pit is not so happy. Surgeons have to balance fertility vs getting tumor vs not having to come back in. My prolactinoma did not come back but my Cushing's tumor came back right away. Dang it!

Usually surgery is reserved for those where meds do not work... I have to say the surgery was not so bad (not the worst of my 12 so far) but any surgery should be avoided if you can do the meds IMHO. If the meds do not work and your tumor grows - get it out.

That is my opinion - but it is your life. You have to think about the consequences for you.
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Avatar universal
Hi again :)

So:
30/10 2004 Pituitary gland tumour in the right side size 6x6x5 millimetre, SKEJBY SYGEHUS
06/12 2005 nothing abnorm, HERLEV HOSPITAL
16/06 2006 Pituitary gland tumour in the right side size 6x6x5 millimetre, SKEJBY SYGEHUS
17/12 2008 nothing abnorm, FREDERIKSBERG HOSPITAL
13/08 2009 Pituitary gland tumour in the left side size 4 mm, RIGSHOSPITALET

The Radiologist at Rigshospitalet said they havn't used "dynamic contrast" in Herlev- and Frederiksberg Hospital, and that is why they couldn't find the tumour.
I have an appointment with a neuroendo 30. sep. Many say operation can make everytime worse than it already is. What do you think? You have tried it and have some experience! The only medicine I have add'ed is Biperiden in feb, and that has helped a lot. If they remove the tumour is it possible that the dopaminlevel can be normal, so that I don't have to take Biperiden?

Ys Anja
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1032548 tn?1252515765
Any Tumor on the Heart of the Harmone Gland can cause symtpoms. Just as the heart is to the body so is the Pituitary Gland to your harmones controling the rest of your harmones from their glands. The first tumor-lactating i noticed no symptoms other than the thing threw me into early menapause!  (This was found at Duke while living in myhomestate of NC.)They did not call it  Non Functioning- What! Within a year it could not be seen on the MRI. 2005. We moved back to Ky in 06. Hubby just couldnt get coal mining out of his blood.  As what i thought were Unbearable symtoms from menapause i asked for another MRI almost 2 years ago. Now starts the Wait and See game. First MRI 4mm. Wait another 6 months etc. Now the 3rd MRI 5mm and 3mm tumors. They are small but so is my pituitary gland. One possibbly growing into the canaverous sinus's along with other problems not on the first 2 mri's. Menapause nor Stress is causing my heart to palpitate 24/7 and sweating like i',m cooking from the inside out 24/7. I'm homebound due to this with the execption of one med my md prescribes that gives enough relief for me to get where i need to go. I've been to vanderbuilt, here in Ky and a little over a week ago back to Duke where they picked up on it from one symtpom in 04. I Cannot take it any longer. BTW...The end. at Duke last week did discover they are lactating also. By the end of next week Some kind of treatment Will be going on, and i'm still packed ready to fly back there. I prefere the things taken out of my head, only by the grace of God i've still got half a mind. No more wait and see, or appointments 3 months away, i need to be in a hospital so all that can be taken care of and monitored.
And there is a difference in certian cases between men and womens tumors and how they are treated just for the record... :o)
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Avatar universal
Hyperplasia is an overgrowth of cells. It can happen anywhere.

I am glad you are feeling better and I hope the doctor can help you out as well.
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Avatar universal
What does hyperplasia mean?
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Avatar universal
My doctor thinks it is in the right side. I have to travel back to Aarhus in Denmark where the prof is. I got a hold in the prof in Holland and I just "forwarded" his mail to this prof, and now he wants to see me again. The medicine is working fine.. never been better. I take 0,75 mg Biperiden before bedtime but I would like to get so well so I can get a job again :)
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Avatar universal
Only some tumors, alas, at this point, will shrink, no matter the size, with medications.

It really depends on the type, hence you have to know what type you are talking about. Prolactinomas are this type and will reduce. They did come out with meds for acromegaly too. They have some meds for Cushing's, but they are not effective long term, so surgery is still the main treatment. There are no meds that I know about for TSH  or LH/FSH secreting tumors. Still if meds do not work, surgery will be used.

However, I have not heard ever that any med will destroy the pituitary gland.

Surgery is necessary, sadly, still for some tumors.
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986593 tn?1283532211
There is a treatment for the smaller tumors without surgery. The med actually shrinks the tumor and most times makes it disappear. The tumors are harmless unless it gets to big and starts to affect the vision. I have one. I now take testosterone for the side effects of the tumor. No sex drive, no erection and no energy. After the first 3 months of testosterone i still felt the same. Blood test showed my testosterone was even lower than before.They doubled my dose and now i feel great. I cant beleive the energy i have now. also drug use will also destroy your pituatary gland(thats another problem i had)but it fixes itself after you stop your addiction. There is treatment that works without surgery. The surgery rarely is necessary.
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Avatar universal
It either does not make sense or... well, my history was similar... LOL... sad but true.

I had thought my only tumor was on the right and then only 12 years later found another on the left and that report only reported the one on the left! So, it could be that you have a second tumor... my first spread out (see the pic in my pics and actually got large, but only showed up as a shadow as a while).

You may have hyperplasia, or the med is working. What is your doc saying?
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Avatar universal
Hi

Now I got the answer from the 5th MRI-scan:
30/10 2004 Pituitary gland tumour in the right side size 6x6x5 millimetre
06/12 2005 nothing abnorm
16/06 2006 Pituitary gland tumour in the right side size 6x6x5 millimetre
17/12 2008 nothing abnorm
13/08 2009 Pituitary gland tumour in the left side size 4 mm

This just doesn't make sence??
Maybe it is in the right side, and maybe Biperiden was made the tumour smaller??
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Avatar universal
I have got the meds to lower the prolactin levels now. It has really help. Before they have me dopaminantagonist (anti-psy meds) and it blocks dopamin so for over a year the milk was running out of my breasts. Now I only have some left, but Iam almost normal now. Idiots.. I have had this since 2001 and they don't do nothing but telling people it is all in your head. I have had my 5th MRI done 13/8 but the doctor is on holliday so I can't get the result before she is back. This public system in Denmark is crazy, we pay max 68 % in tax, the highest in the world, and this is the help then you get sick!
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Avatar universal
Hey, my GYN said that he has a meds to treat that type of tumor....he wished it was the type I had so it could be treated that way.  Maybe you should try your GYN instead of an Endo?  Either way, I am in contact with a doctor of Medical College of Georgia in Augusta...hopefully I can get a 2nd from them...good luck to you
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Avatar universal
You need to find a neuro-endo to test and treat you and have them refer you to a competent neuro-surgeon. The one you are seeing should not operate on a pituitary as a 7mm tumor is certainly large enough to operate on by an experienced surgeon. He knows nothing.
Girl-DK, I was told the exact same thing about my 5-6mm tumor when I was fully lactating out of both breasts, that mine was an "incidentaloma.". I was ready to do damage to people's parts as I was so angry at being dismissed. Find a doctor and get the meds you need to dry you up as you will feel 100 times better! It is hard, as it took me a long time and a lot of arguing.

Why is it that when you feel your worst, you have to fight for your health?
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Avatar universal
I have one too size 6x6x5 mm. 50% of the time to high prolactin and have milk in my breasts, 3 times to high metabolisme, but they say it is a non-fun pituitary tumour.
I'am having a new MRI-scan done the 13th of August.
Have you had problems with your metabolisme?
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Avatar universal
my neurosurgeon doesn't want to do the surgery...he said the risk outweigh the benefit...I know deep in my heart that it is the root of many ailments that I have.  I have tried meds to balance myself back out, but nothing works.  I have severe headaches & swelling of the eyes...severe tinnitus also.  I need a 2nd opinion...it is 7mm in size, which is not big.  He wants me to follow up w/ mri's every year & endo labs. I am not satisfied at all.
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985561 tn?1255200360
Hi this is Angelo from Athens Greece.
My tumor was also found by incidental symptoms.
I suffered a lot of headach two months ago even when I was sleaping at night and a lot of pain in one of my eye so I went to an eye doctor to have an exam.
I thogh that all the symptoms had to do with time spent at work in front af a PC.
He found that there was nothing wronk with my eyes and he sugested to go and have an MRI.
I had an MRI done and was diagnosed with a pituitary adenoma, if I am correct 3 mm
I also had an hormone test and most of the limits were down.
I was very very scared after the above, I thogh that my days are over soon.
The endocrinologist gave me a medication and all the headach and pain disappear and I am back to what ever doing before like going to gym.
I am scheduled for an operation on 19 of August.
What about you, are you going to have an operation ?
Take care
Angelo
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Avatar universal
You are coming up pretty soon on your surgery. I really hope everything goes well with it. My uncle recently had surgery on a large pituitary tumor that was affecting his optic nerve and causing balance issues. He was blessed with a very fast turn around.

I completely understand wanting to get better! It sounds like you are well informed. Please keep up informed on how you are doing.

Crwstar
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Avatar universal
I plan on having my surgery in August.  I have another appt with the surgeon on the 31st and we will schedule from there.  I have alot on endocrine problems going on and some will most likely get better after the surgery.  There's only so many meds you can take to make adjustments and some of those can have bad side effects too.  Fact is, I want to get better and this is the key, plus need this tumor off my optic nerve, I am having alot of problems.
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Avatar universal
My tumor was small - and it caused a lot of symptoms. It really depends on the experience of the doctor though - some will not tell you that at all!

I ended up with two - and wild symptoms and denial on the part of a lot of doctors that any symptoms came from any pituitary. I understand. But some can be treated medically, not with surgery. You need testing to know what you have.
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Avatar universal
Welcome swilkes,

Lots of good information there. I'm wondering, did they change their policy around joining the forum? I can no longer log in there.

When are you having surgery?

Crwstar
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