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Old 03-06-2003, 05:01 PM   #1
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Unhappy Enlarged pituitary

I had a very severe headache and my primary care doctor sent me for an MRI. The result was an "enlarged pituitary." I went to the neurologist on Tuesday, he said this is definitely a tumor. I have had blood drawn, but don't have hormone results yet. My visual fields are fine, optic nerves are fine, and I have "spontaneous venous pulsations" indicating no increased intracranial pressure.

I'm scared to death - I'm 33 and have a 2 yo son.

Any of you have pituitary tumors? How did you find out? What was your treatment?

THANKS for any advice and/or information you have.


 
Old 03-06-2003, 05:50 PM   #2
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Hi There:
I had MIR done 1 1/2 years before I was getting headaches and partials seizures. My test results were that I had a cyts close to the pituitary . Two week after a had a grand-mal seizure.For me they are not doing anything at the moment because a cyts not a tumor but am going other MIR pretty soon. Hopefully it has not grow. I am scared to death to so you are not alone. I wish All the best and keep in touch and I will too. One more they do not operated for nothing on your brain, they only do if it's necessary.

 
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Old 03-06-2003, 11:03 PM   #3
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Do not be afraid. Pituitary tumors are actually quite common and very treatable. Your course of treatment will depend upon what type of tumor you have. They are catagorized by the hormone that they produce. Acromegaly is caused by tumors that produce excess growth hormone, Cushing's is caused by tumors that produce excess cortisol, a tumor that does not produce excess hormone is a nonfunctioning tumor. But even a non-functioning tumor may cause excess hormones by pressing on the pituitary stock. With these types of tumors surgery will probably be recommended. The surgery is very succussful, but make sure the surgeon does many of these procedures with a high level of success.

The most common type of pituitary tumor is a prolactinoma. This type of tumor produces excess prolactin levels in the body. But be careful, other types of pituitary tumor are often mistaken for prolactinomas because other types of tumor can also slightly elevate prolactin levels. Prolactinomas can often be treated with medication alone. Either Dostinex or parlodal. Dostinex is the better medication, it is more effective with fewer side effects.

When you are diagnosed with a pituitary tumor, the first doctor you want to see is an endocrinologist. One who is a pituitary specialist. You would be surprised how little some doctors know about pituitary tumors. You want someone with pituitary experience. Do not let a GP guide your treatment, they don't understand pit tumors well enough. Be sure to see an endocrinologist before you see a surgeon. The endocrinologist will be able to more accurately diagnose what type of tumor you have and direct your treatment.

I was diagnosed 2 1/2 years ago with a 2.1 cm prolactinoma encasing my carotid artery. My prolactin level was 1200 at diagnosis. Normal levels are below 30. This is using the lab measurements used in the United States. So my tumor is definately a prolactinoma. Many doctors get confused and falsely diagnose other types of tumor as prolactinomas, and thus treat the tumor incorrectly.

I have been taking dostinex to treat it. Some people don't tolerate the medication, and end up having the surgery even if they have a prolactinoma. In the first 6 months on dosinex, my tumor shrank to 1.5 cm. After that there was no further shrinkage, but so far the medication has suppressed the excess prolactin and prevented the tumor from growing further.

This may be more information than you want right now, but I hope it is helpful. If you have any other questions, feel free to ask. Being a patient, I have learned quite a bit about these tumors. Good luck



[This message has been edited by nebulous (edited 03-07-2003).]

 
Old 03-09-2003, 06:22 PM   #4
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Are they stating that you have a pituitary adeoma? Be careful. I had an MRI in '98 and my physician believed this was what I had. I was sent to a Neurosurgeon first, then and Endocrinologist for a 2nd opinion. The surgeon described the surgery - they crack your maxilla (the bone between your nose and upper lip) to go through your nose and remove the adeoma in your cranium. I then went to the Endo for my hormone levels - these were fine. Physicians seem to be seeing this more and more. A malfunction of Cortisol would be a red flag. I think they should be looking at at least 7 hormone levels (GH, TSH, etc.). Removing an adenoma could lead to more problems. If this is the case, I suggest you get a second opinion and ensure that surgery is the LAST resort.

Monitor this closely...

 
Old 03-09-2003, 07:02 PM   #5
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giupset,

What did your diagnosis end up as?

I am in no hurry to have surgery, so I'll do the best I can to get an accurate diagnosis.

THANKS!

 
Old 03-09-2003, 07:04 PM   #6
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Followup, all of my hormone levels are OK (though I haven't gotten the Growth hormone results yet, but all indications are that this is OK, too).

Thanks.

 
Old 03-09-2003, 07:46 PM   #7
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giupset,
Pituitary adenomas don't always produce excess hormones in the body. Just because your hormone test came out normal doesn't mean you don't have a pituitary tumor. A large percentage of pituitary tumors are non-functioning, which means they do not produce hormones. These tumors can and do grow, and if you ignore it, your eyesight could eventually be affected. You need to find out for sure if you have a tumor or not, and if you don't get surgery, it needs to be watched closely to make sure it doesn't grow.

There are different ways to treat a non-functioning pituitary tumor. Some surgeons do go up through the upper lip (this is the old fashioned way), but now they mostly go directly up through the sinus(depending on the size and location of the tumor). It is minumally invasive, and the recovery time is much faster. They have really come a long way in improving the surgery. Of course, you don't want just any surgeon, you want one who is up on the latest procedures, and has a lot of experience with pit surgery.

There is also gama knife radio surgery, which is non invasive and targets radiation directly on the tumor.

If there is any chance you have a tumor, please don't ignore it. The earlier it is treated, the more chance of successful treatment.

 
Old 03-10-2003, 07:12 PM   #8
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Hi All,
No, a pit. adenoma does not always cause hormone malfunctioning, especially if it is a non-functioning pit. adenoma. But if the hormones are fine and the adenoma hasn't grown, doesn't affect the eyesight, etc., what is the purpose of the surgery if it is not bothering the patient or showing any signs of malfunction?? That's why I say this should be monitored closely meaning an MRI every now and then, watch for amenorrhea, GH deficiency, TSH, decreased eyesight/eye pain (due to pressure on the optic nerve).

I've had one MRI with no change - thank goodness.


[This message has been edited by giupset (edited 03-10-2003).]

 
Old 03-10-2003, 07:49 PM   #9
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I agree, if the tumor isn't growing and is not affecting vision or any other structures, surgery may not be necessary. It is probably safe to just watch any tumor under 1 cm for awhile. Just be sure to get a yearly MRI to keep track of it. You don't want to be surprised by a sudden loss of vision or a hemorrhage. Good luck.

 
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