View Full Version : Pituitary Tumors after Aneurysm Ruture?
JulieNH
06-07-2008, 01:12 PM
Hi all,
I'm new to this forum, but I have been on the Cerebral Aneurysm Forum since 10/06. My Cerebral Aneurysm ruptured in June of '06 and after coiling, lots of vasospasms and a stroke, (I'm doing well though). However I recently had a MRI to check on another aneurysm and it was evident that something was up with my pituitary gland. My question to all of you is do any of you have a history of aneurysm, ruptured or otherwise as well as pituitary tumors?
My GP is not sure if my aneurysm is putting pressure on my pituitary or if it a problem all by itself. I have not had any blood/urine tests yet, I'm sure that's coming this week.
I would appreciate a list of questions I should ask my GP, and then eventually an endo. And perhaps a recommendation for an endo and NS in NH or New England. Thanks in advance. This forum is wonderful!
JulieNH
rumpled
06-08-2008, 12:01 PM
I am not sure if the pituitary tumor is related at all the the aneurysm to be honest. They occur in about 20% of the population. Some doctors take that as that they mean nothing, but anyone who has one will tell you that nothing could be further from the truth.
There is a good pituitary center in Boston (MGH) as well as at Dartmouth. However, they are known to be conservative. So if your tests are borderline, or iffy at all... you may be dismissed. I am a victim of such thinking. I had a pituitary tumor show up in 1992 and went to several highly regarded places in NYC and Mayo where they ran a few tests, and told me it was an incindentaloma, told me to ignore it, patted me on the shoulder... and turned me away. In the end, I am now permanently disabled. I also had two tumors as one hid from imaging for 12 years.
My advice. Get all your hormones tested - thyroid (free T3, Free T4, antibodies for both graves and hashimoto's), adrenal (cortisol, dhea sulfate, renin, aldosterone), pituitary (TSH, FSH, LH, IGF-1, ACTH, ADH, prolactin... may have forgot one there...), male/female (estrodiol, bioavalaible testosterone, sex binding hormones) plus ferratin, vitamin D-25 and 1,25, CBC, electrylyte panal, A1c, B12,... 24 urine tests come later if need be.
ACTH and renin are often subject to lab error - must be in an EDTA tube (lavender), should be chilled, spun immediately, and frozen immediately. Both degrade at room temp in minutes so if the tech just tosses the tube in a bin... your results are ... wrong. Not sure if aldosterone is the same. I bring ice, prod the tech... or my results are bunk. It added years on to my diagnosis for all the error, dang it.
It is a lot of tubes - but then you have a baseline - then just test what you need after that. I get most of that tested regularly - about 8-12 tubes. I have had up to 22 taken at once...
JulieNH
06-08-2008, 12:56 PM
Thanks Rumpled, I really appreciate your advise!
During the actual rupture of an aneurysm, blood flows from within the brain (usually from within the Circle of Willis, a web of arteries which encircle the pituitary gland) to within the sub-arachnoid space and around the pituitary gland and basically poisons the space and the gland. A long term sub-arachnoid hemorrhage(SAH), or a repeat SAH such as I had, causes even more problems. Please see article : http://pituitary.mgh.harvard.edu/NCBV11I2.htm
for more info.
The other problem with aneurysms and the pituitary is following coiling, pressure remains on the pituitary because the coil, itself, takes up space up against the gland. Now my doctor believes I have a 2nd aneurysm forming on the mirror opposite side of my Circle of Willis, putting more pressure on my PG. Nevertheless, there is something going on with my pituitary.
The odds of my survival following the first aneurysm rupture and then a secondary rupture 5 days later was less than 15%. God was with me! But I have some serious after effects from the rupture itself and my doctor is now thinking Cushing's.
Again, thank you for your advise. I have a feeling this is the beginning of a very long road, and lots of blood tests (22 tubes at once :eek:EEK!!!).
JulieNH
JulieNH
06-08-2008, 03:22 PM
Rumpled,
I came across the following:
"Ballooning out of one of the large blood vessels adjacent to the pituitary, called an aneurysm, can press against the pituitary as well." http://www.pituitarysociety.org/public/specific/hypopituitarism/causes_html
Thanks for listening!
JulieNH
rumpled
06-09-2008, 10:45 AM
Well, thank you!
I know from talking to my surgeon that pressure on the pituitary can cause hormonal issues, but I had not really thought about the coiling causing a lesion - which may be scar tissue... maybe.. but anyway... they even said that whatever was is my head could be nothing but the pressure of it, if it was in the wrong location, could press the hormones and thus cause the pit to secrete more even if it was just cyst or scar tissue (as could happen with an accident or in your case, the coiling..).
I do not envy you the Cushing's as that is what I had. You do have options though other than pituitary surgery. There is ketoconizole for a temporary relief of cortisol, and what I did, which is removal of the adrenal glands. Very drastic, but since my ACTH tumor kept growing back, I had no choice. My ACTH is 1917 (4-27) at last check... but the risk for that is Nelson's syndrome in which case without the adrenals, the tumor grows like crazy. Usually if the ACTH is above 1000, Nelson's is suspected, but my doctors are being very... weird about me even though I have the hyperpigmentation (finally a tan!!!) and prior to my surgeries, all my imaging was incorrect anyway (a tumor hid for 12 years) but no one will listen to me. Anyway... sorry for the side trip there... if yours is not a true tumor but scar tissue, you will not have that risk and can just remove the adrenals - life is still risky as well, frankly, you cannot life without adrenals so you have to be careful, replacement doses, medic alert bracelet, stress dosing etc. It is a lot to learn but it is a lot better than Cushing's.
I am panhypopit... I hope you don't get that way from the aneurysm...
To learn more about Cushings, www.cushings-help.com. A lot of people without adrenals are there, too.
JulieNH
06-21-2008, 04:37 PM
I still haven't gotten my results back (Grrrrrrrrrr) from my testing.
I came across the following article about Subarachnoid Hemorrhage (massive bleeding into the subarachnoid space and throughout the brain) following the rupture of a cerebral aneurysm and the ramifications to the Hypothalamapituitary gland.
http://jama.ama-assn.org/cgi/reprint/298/12/1429.pdf.
http://jama.ama-assn.org/cgi/reprint/298/12/1429.pdf
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