I have been diagnosed with a macroadenoma. My neurosurgeon has recommended surgery. I haven't given him the "yes" answer yet because I am so scared of my pituitary being more messed up after surgery than what it is now. I guess my question is, I am only on cabergoline (dostinex) now, so why would I want to have surgery and be on more medications than what I am on now?
I have some for you first. You have a macro - but not responding to meds? I am assuming prolactinoma due to the meds you are on, is that right? Did it grow up to the optic nerve or down into the cavernous sinus? Do you have a copy of the MRI report?
Has your surgeon done over 500 pituitary surgeries? Is he a pituitary surgeon? Has he done 50 surgeries in a year? Has he done a LOT of macro-adenoma surgeries? Complications? Does he use an endoscope (better than other tools more view)? Are you working with a neuro-endo? Do you have copies of all your labs?
Post op, yes there are more risks - often thyroid and growth hormone are the most at risk post op and there is also ADH but that is often temporary. This can be the skill of your surgeon as well as how your tumor is placed as to how many hormones you lose.
Larger tumors need to be removed as there is risk to eyesight and to nerves and blood vessels up there - and once they get too large, radiation is the only option for parts of them - parts become inoperable.
There are some links in the health pages - lowest part on the right that may help you but certainly ask more questions! I had surgery and I had a prolactinoma as well as Cushing's too - it is actually not a bad surgery in good hands.
Yes, I have a macro that my endo told me was 3/4 inches in size. I never got to see the MRI and no I don't have a copy of it. Yes, it is a prolactin producing tumor. It is not at the time growing into the optic nerves or my sinuses. I guess I'm lucky on that part. My endo sent me to the best Neuro here where I live and he is one of the best. My prolactin level started out over 4300 but now is down to 195. So I am confused by this. My endo told me that the cabergoline would shrink the tumor back down where I don't need surgery. I'm not sure what size it is now, but I am supposed to be rescheduled for a new MRI here in the next day or so. The visit to my Neuro is where he told me he recommended taking it off, but he was looking at the old MRI that was taking right from the start. So I think I will wait and see what the next MRI shows, to see if it has reduced some. He said the tumor is inside my Pituitary gland. So I'm not sure how he can remove it without destroying my gland.
So you are doing better now after the surgery than before? Tell me your side and why you had the surgery and where you are now with it, if you don't mind.
Usually tumors are indicated in millimeters so... I find that the guy telling you 3/4 and inch is rather um, strange? That would translate to roughly 19mm or almost 2cm - so that is rather large by pituitary standards and if I were you, I would certainly get copies of the MRI reports for yourself and read them so you know how your tumor is placed. Just so you know, something that size has to be squished either up or down - so if you don't have eye issues (I am surprised that you are not being told to see a neuro-optho as well) then it usually grows down into the cavernous sinus and it can wrap around the carotids etc. You should know. A skilled surgeon - A VERY skilled surgeon can do it - and a neuro is not a good treating doctor as they don't treat pituitary - you need a pituitary center.
If the tumor is *inside* the gland - then that sounds like it could be a Rathke's cleft cyst or something else - so you have to really read the report to know.
Not everyone reacts to the meds (most do) - but you have and so it is odd that they want surgery before the next MRI? Do they check all your hormones? Do you get copies?
I am panhypopituitary - that is to say, I have to replace all but one of my hormones... not so much from my pituitary surgery though but as I had to remove my thyroid my adrenals my ovaries etc etc and my prolactinoma was not the issue but the Cushing's was/is the nasty factor for me and my tumor came back and makes my life rather a pain... It really pays to get copies of your tests, read up and be an educated patient - as well as get a good team (which may or may not be the first set of docs) so you are set to get the best possible outcome - especially with a larger tumor.
Well I had my MRI done at 9:30 at night and my Endo's appt. was for 7:15 the next morning. The girl doing the MRI told me the test wouldn't be ready that early but the Endo could call and get the results. So my Endo never saw the MRI (which, I'm sure he wouldn't be able to do nothing but read the report anyways) but he was told over the phone that the size of the tumor was about 3/4 inches and that it wasn't growing into the optic chiasm, but I did have left eye pain with weird stuff going on with it. It would open really wide for a few seconds, then just go back to normal.He did refer me to an ophthalmologist, but that appt. is for the 19th of this month. He also referred me to the Neuro, but he is not a Pituitary surgeon. He said he has done quite a few surgeries, don't know how many that consist of, but just by him telling me that I need to have surgery before even ordering and wanting to look at a new MRI, (which I have another one scheduled for Tues. of next week) tells me that he is just after the money. He also told me that if the pituitary tumor had shrunk any from taking the cabergoline it wouldn't have been that much. So I don't know who to believe. I've always read on the internet, that if the tumor responded to Meds, then you wouldn't need surgery. Yes, they have checked all my hormones and so far the only one that was off (besides prolactin) was my thyroid. It was a little underactive, but will check it again in 3 months when I go back to my Endo for more blood work to make sure my prolactin is staying down. So, how do I go about getting my records? Do I just ask the doctors office for them? I guess I should have done all of this already. I feel like I don't even really know whats going on with me. I just have to go by what they tell me and you wonder if they really even know themselves. Anyways I need to get educated like you say, and I will. By the way, where would I find out where to find a good pituitary surgeon, just in case one day I do need one.
I hate that you have went thru so much. Jeez, people look at their own little problems as something so big. They don't even think that there are other people out there that may have it worse. You definitely have it alot worse than me and I am really sorry for that. You seem to doing good though and seem to have held it together. You also help people like me that have no clue whats going on and I am thankful for that. People like you are what makes the world a little better. I just want so say thank you.
Don't worry about feeling lost right now - it is really normal. I was certainly not an expert when I was first told about mine and my lovely docs told me to ignore mine... hah.
Usually you can ask your doc for the copies - as well as the lab when you get it done (sometimes though they don't send it) and for the MRI report ask at medical records you can get one copy of the CD and the report for free usually. I ask for the CD before I get it done. Dynamic MRI is how you want a pituitary MRI done so it needs to be done properly. So if the new MRI is a proper MRI then it is worth it, otherwise, eh...
How long have you been on the meds? Did you get an MRI first so you know the tumor shrank?
I would not rush into surgery if I was you - and when you talk to the surgeon - do ask about number of surgeries etc as I outlined specifically how many macroadenomas he has treated as you need to know - plus complications (stroke, vision loss) as you may want to travel, if need be, to a more experienced surgeon - this is one surgery you do not want to mess around. It is in a tight area with no room for error. To find a surgeon, you need to contact a pituitary center - then start looking at the doctors that they know. Have you looked at the links in the health pages (really low right).
You know that doesn't really surprise me that they told you to ignore yours. I know its sad, but it happens alot of times when doctors are not qualified enough. Alot of people end up alot worse that way. My husband being one of them. He got misdiagnosed by a doctor that kept saying he just had sinuses.
Anyways, thanks for all the info. Well lets see now, I have had high prolactin levels since I was about 19. I had a MRI done back then and it showed no signs of a tumor. My endo back then told me it just could be miscommunication of my pituitary gland. So I really never worried about it that much. He didn't seem to worried about it and he didn't tell me how crucial it was to stay on the meds and get regular labs. So over the years I would get on the meds for a bit and then back off again. The last 10 years I have just let it go. I went back to the doc around the first of Feb. 2012 because of eye pain, then was sent for the MRI and then was put on the cabergoline. So Tues. test will be the first new MRI since I have been on the Meds. The Endo just wanted a MRI of the pituitary only. So I don't know if thats Dynamic or not. I will be sure to ask for my CD before the test. I really have no one to blame but myself for this. I have been the one that has let this get out of control. I guess I just didn't realize how serious it could get. Guess that's what happens sometimes when you don't educate yourself.
Call up and ask how they do pituitary MRIs at that facility - most know to do it dynamically and if they don't have a clue, get the script and GO SOMEWHERE ELSE. They have to have a certain piece of equipment to inject while you are in the machine - and if they pull you out - yeah - they are wrong! I had that at my pituitary center even (and that center also told me 3T machines were not in clinical use and that they were not sure if they were ok as they might have side effects - the guy was stunned when I told him I had had 3 of them and had no effects, told him brands, and got ticked at how he did the MRI...)
Yeah - I let mine get out of control too - I am disabled for that - I did try but everyone just said it was anything else like PCOS or my diet (haha) or thyroid or whatever... I even stopped going to all docs for a while and tried herbs and all - got really bad for that... and finally someone mentioned Cushing's, I did research and the rest is history but it still took 4 years from that point (and 12 years from knowing I had a tumor!).
I feel bad that you were not followed... docs are so ignorant about pituitary stuff - they really need to learn more! BTW - even post op, make sure you are followed LIFETIME. These things grow back... ah, nice.
Okay, I have the first MRI report that I never got to read in my hands. Oh jeez, sounds worse than what they told me. My endo said it wasn't in the optic chiasm and 3/4 inches big, just sitting in the middle..lol. My neuro said he wanted to operate but really got no specifics on the tumor. Well here is what my report said. There is a 1.3 x 1.8 cm in diameter fairly homogencously enhancing mass in the sella, extending into the suprasellar region. There is further extension into the left cavernous sinus and up to the left orbital apex, with this portion of the mass lying adjacent to both the optic canal and the superior orbital fissure. There is minimal extension into the foramen ovale as well. The mass surrounds, but does not narrow the left carotid. The mass does not contact the optic chiasm and does not significantly abut the right carotid... etc... I had ask my Neuro had it invaded my sinuses and he said no. Wonder why he told me that? Oh well, now waiting for them to call me back for the results of my second MRI, which I do have the CD to, thanks to you, for telling me to ask for one.
Sinus in medspeak is a cavity, not just what we think of when we uh, blow our noses? So there is bone between that set of sinuses and the pituitary (the surgeon has to break a bone to get to the sella - the sella is what the pituitary sits in - and there are a lot of *sinus* regions in the head - and that is what can be invaded, not what a layman typically thinks of as sinus - if that makes sense?
So it sounds from what your reports says, if I get this right, yours did grow up (and around) so it is very near the optic nerves and the carotids - so I would highly recommend a super duper surgeon. The good news is that it sounds like all or most of your tumor is operable (which is odd in such a large one from most I have read about) although not sure about the part in the foramen ovale and with a good surgeon, you can get a good outcome. I would really get to someone who has done a lot of macroadenoma surgeries.
hi...i was diagnosed with pitutury microadenoma of size 8.6mm 4 months back..due to prolactin...i m under medication(cabergoline)..i had tested my vision that time and they told no problem with it..but my power of eyes is increasing in left. and i do have some side effects of meds..is that normal? my prolactin level has decreased now to 33 from 200. should i undergo a surgery or medication is better?
You need to see your doctor. You have to stay on the medication pretty much forever to keep the level in check, but you may (or may not) be able to change the dose a bit to lessen the side effects. There is also one other medication, parlodel, if you want to try that one.
The medication does have side effects. They may lessen over time. You can also speak to the pharmacist about how to take it to help lessen your side effects.
As for your eyes, some changes may be just due to age and not the tumor. Usually the tumor changes are loss of side vision.
Forever means how long? And its better to stay on medicines than to opt for surgery right? will the adenoma be caused only due to prolactin? like will two hormone cause adenoma? because i just checked only my prolactin levels no other hormone. And what you mean by infundibulum displaced to right.this is written in my MRI report..Is it ok?
Forever means just that - for the rest of your life.
In general, the meds are a better option as surgery carries some risks. The meds also have risks.
If you have a prolactinoma, you should be under the care of a pituitary center and get ALL your hormones checked. Prolactin can be raised by other hormones so while it may be lowered, it could be a different issue.
The "infundibulum" in this case is the pituitary stalk. The pituitary hangs down off the stalk in a little pouch of bone called the sella turcica and the whole thing is filled with cerebral spinal fluid. Your tumor is, I would guess, placed either up on the stalk (which is generally inoperable from what I know), or up on top moving the whole pituitary to the side making the stalk look like it is displaced.
As your tumor is on top, you really want to control it as it may be more likely to grow up, and if it gets larger it may get closer to the optic nerve chiasm.
Adenoma is another word for tumor. Hormones don't cause tumors - they actually don't know the reason the tumors form. Believe me I wanted to know since I had a couple myself. I had the surgery myself. If you do have the surgery - which if the medications don't work, you have to have, you typically lose at least thyroid if not growth hormone. I now have to replace all hormones but one - not all due to my pituitary surgery but I lost all my other glands through disease.
Hello, I don't want to interrupt the conversation..but I had a question for u and hope that u can help me. I don't know what to do. I have been dx'd with Addison's disease that was back in '12, but...I have been researching and found other information that is tied into this Addison's.
I have an "Empty Sella" and I never knew that it was over the Pituitary region. I assumed that since, I also have an AVM(left cerebullar hemisphere) that it would just normally be there. I really thought the empty sella was a part of that, now I donno what to think. Could I have an Adenoma pressing on my Pituitary? I cannot believe that the docs never explained it to me, I had to find out on my own what was going on. I cannot make my own Cortisol and my level was really the lowest I have ever seen. IT was one(1)...only 1.
Now, I am having to rethink everything and wondering why no one did anymore testing on it.,.and just left me to fend for myself. Docs just don't know @ the Adrenals...or Addison's, not as much as they should. IT is a life-threatening disease and know that I could have died a couple of times or more there. I don't understand how a doc couldn't be familiar with or know how to explain this to patients. They patients need to know what they should do...to stay alive. I was blessed to find a way through and still here.
I am wondering if, my Endo knows what he is doing and that I need to find me one who is going to explain all this to me. I do hurt on my left temple, all the time..and even, if I think too hard or get stressed...it will be pain. What should I do...I can't just lay here..and die? I have to figure out why they would dx'd me with Addison's..when, I could have something going on over my Pituitary...because of the Empty Sella.
Can anyone help tell me what they think is going on. My Cortisol is still low(5.2 now, I think) and taking the Hydrocortisone, but that is all. I keep hearing where others taking something else too. My ACTH is low..2.4, Prolactin is low too..I think. Going to look that one up, but my Estradial is high at 231. I thought that is high, but I do take hormone replacement therapy(injections every 3 weeks) I had a Hysterectomy back in '99, left cervix.
Oh, I hope that someone can tell me if I should be concerned or should I not worry, when I have had an empty sella dx'd, since '08 and now the Addison's. It makes me feel that there could be an Adenoma responsible for all of this and no one is pressing any tests or at least, a Pituitary MRI.
I feel that my Endo could be doing more to help me, than he is. He knows that my tongue, forehead and left side of my face is numb. He just tells me that I should get that checked. But, who? I can't find a decent NL that knows @ this stuff or one who will at least, try to help me.
Thank u, for any info that u can give me. God Bless, Karen
Can i know which other hormone can increase the prolactin levels?So that i can do a blood test.. And i m just 22 years.. I started wearing specs...but stil i face difficulty in seein through my left eye..Wil that be because of tumour?
When i was diagnosed with pituitary adenoma, I had high prolactin levels. So the docters just prescribed me to a pooled test of prolactin which showed quite high level. They checked for nothing else. Now i am scared that they dint do a thorough testing.What should I do? and will a pituitary tumour due to prolactin affect my pregnancy forever?
They should have checked everything - as other things can cause elevated prolactin. Did you get a copy?
Do you mean chances of getting pregnant? Some women do have a lowered fertility rate as there periods are irregular, but once on medication, they get better. They would still need a high risk OB-GYN to manage the tumor and the baby as the tumor can grow during pregnancy.
is it possible that i can a have pituitary carcinoma? My dad s sister died at a very young age due to a tumour in head. They dont know much details of it because it was long back when they were young. Are there such chances?
99.9% of pituitary lesions are benign - but some of the pituitary types are... dangerous to the point of being fatal even though they are benign. In other words, stuff does not have to be cancer to kill you. My tumor was Cushing's and I know so many people that tumor killed sadly and almost me. Usually heart failure or kidney failure. Acromegaly will do the same. DI can disrupt the fluids, drop your K and Na, and mess with you and kill you. These *can* happen but are not common - it used to be 50% if you read really really old papers, now it is 5% or less.
However, *tumor in the head* can be any tumor - and anything large enough, or if it is cancer, can do a lot of damage.
If your aunt had an autopsy and/or a death certificate with information - as a family member you can pay to get a cert for a nominal amount.
Rumpled is right. A tumor in the head does not have to be cancer to do you damage. Tumors often grow in size and cause "mass effects", that is they start to expand in a confined space called the brain. How fast it grows and where it grows is critical.
In my macroadenoma the tumor grown from the pituitary up. Towards the optic chiasm. I had it removed or in time I would go blind.
Get a GOOD neurologist, a good one, to give his or her opinion.
...Or neuro-surgeon that treats pituitary. Typically, in my experience (LC may have had better luck!), a neurologist has not had the training to treat pituitary - so my advice is to go with a pituitary center .
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