Brain, Pituitary and Skull Base Tumor Forum Forum
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Avatar universal

They can't agree and my daughter is in pain.

My 12 yr old daughter started complaining of headache and dizziness in mid January of this year. Her performance in school dropped significantly and she seemed to be getting worse. We assumed she had a concussion because she is a goalie on a competitive soccer team and had one in September. The neurologist we took her to ordered an MRI where they discovered a 'pituitary mass' appx. 14x11x11 mm in the sella extending into the suprasellar cistern. A second, more detailed MRI two weeks later showed that it is putting mild pressure on both of her optic nerves. Her blood tests came back normal except for TSH and T4, which were both high and ACTH and Cortisol which were both low normal. She has had a constant headache that does not go away since January and her vision has gotten worse. The neurologist and neurosurgeon can't agree on treatment. The neurosurgeon we saw said the mass could be due to puberty and it may go away after she starts her period. Is this common? The only thing they are doing for her now is putting her on antidepressants. She is out of school due to stability, memory and pain issues, and miserable. She had a pretty good future ahead of her playing soccer and that has been taken away as well. I don't know what to do for her and it's frustrating.
8 Responses
1382849 tn?1337549130
Dear Speakup4kids

I agree there are situations the pituitary gland grows during puberty. However, I had some few patients I had to do surgery in order to decompress and give more space for the pituitary gland in order to take pressure away from the optic nerves.
Pl,ease let me know if you would like for me to review her MRI free of charge.

thank you
Avatar universal
I am so sorry to say that you have met people that DO NOT KNOW how to treat pituitary lesions.

Under the health pages in the patient forum for brain & pituitary tumors, there are links for helps - use them to find a PITUITARY center. Your daughter needs immediate help from a skilled neuro-endo and a neuro-surgeon that has done thousands of surgeries on the pituitary.

She also needs a neuro-optho. She has a macro-adenoma and she needs action pronto. They did not even do enough testing - and I bet the ACTH and cortisol was not 8am fasting - and was the ACTH chilled?

DO NOT WAIT - run for a pituitary center. Contact the magic foundation as well for names - larger university centers, larger hospitals. Get copies of everything, ask questions, get details - and make sure you get a GREAT doctor - duds exist there... it will not go away and she will not go into puberty.
Avatar universal
thats for a doc to decide not you
Avatar universal
True to a point, but alas, many docs sadly do not know a thing about pituitary tumors. They think they are small and benign, and treat them on *wait and watch* when that is not a proper treatment for them - so advising a person to see an expert is, IMHO, not bad advise. If she posted on the expert forum, I would be 100% he would say the same BTW.

I was told many times to ignore mine, and I am permanently damaged from mine after 12 years of that. It may not be the case with everyone - but I would still advocate that anyone should see a quality neuro-endo, get records, and keep on top of things.
Avatar universal
Oops this is the pituitary expert forum - the kid needs treatment. I am just recovering from an illness... went too fast.
Avatar universal
Thank you for your replies. I am beginning to think that either nobody knows anything about pituitary anything where I am or my daughter is not being truthful with me. It is just so frustrating! She is literally covered in stretch marks and the only answer anyone can give me is that it's a side effect from the 7 days she took decadron 3 months ago. We have been sent to Stanford so hopefully they will do something though it's not looking good. Their neurosurgeon told me without abnormal hormone tests it couldnt be a tumor regardless of what the MRI showed. I will have to see if I can get copies of her MRI's.
Avatar universal
I had the same issue in my quest. There can be many reasons for normal testing. Lab error (ACTH is a fussy test, needs to be spun immediately, letting urine jugs warm, not combining multiple jugs just sampling one, wrong tube, wrong test protocols). Testing time error (all blood testing should be 8am fasting). Patient error (urine jugs must be kept cold at all times, even with preservative, despite what the lab tells you!, going to lab at wrong time, etc.).

Plus she could be cyclical (I was) and so test normal even if she is sick - the cycle can be hours, days, weeks or whatever. I was low during the day and high at night - but it took years and finally 10hour urine testing found it. 24 hours testing was normal as my lows averaged out my highs!

The surgeon is correct - no one will do anything without the testing to corroborate the tumor. You have to get an expert to find the testing protocol to uncover the type of tumor. If you get a smart doc, hopefully they will set up saliva testing to find the cycles. Less invasive than blood.
596605 tn?1369946627
UCSF and UCLA both have very good pituitary centers. People can have rumors without abnormal tests. Just as they can have abnormal and the tumor might not show up on the MRI.

Ur daughters elevated  TSH and T4 is abnormal. This along with low normal ACTH and cortisol could very well be due to an adenoma or cyst. Combine that with her symptoms and the high prevalence of lab error she needs a work up up done by a neuro endo, a neuro surgeon and neuro opthamolagist.

I see all three of these specialist regularly at Stanford and am post-surgery.

The optic nerve is not good with pressure from a growing gland or adenoma.

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