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herro
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adenoma was found 2001 or 2002(bad memory).prolactin was slightly elevated(stalk effect) so cabergoline didn't work. it kept growing and was just touching optic chiasm so i had surgery to remove(transphenoidal). haven't been the same since, now have hypocortisolism. |
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lynzie
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In what way have you not been the same? Hormonally? Pain? Emotionally? I wanted them to just go in and take it out when I was diagnosed Jan 8, but the more info I get, the less I think it's a good plan. What is the "stalk effect"? They say mine is non functioning, but I seem to have some hormone symptoms. - Lynzie P.S. I posted in your pituitary tumor forum, too, so there's more info there than here. |
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herro
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stalk effect is the tumor getting in the way of normal functions of pit. it effects the feedback loop. they thought mine was a prolactinoma but later decided it was non-functioning. my prolactic was slightly elevated. i tried cabergoline, a med that is supposed to shrink tumor but it didn't work. my prolactin went down but tumor kept growing. i will post later to tell you about my journey. how long have you been having symtoms? they kept telling me i was just getting older...
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lynzie
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I started getting headaches about 2 years ago that started with mild 3 day headaches and progressed to nearly every day and more severe. I have fatigue that has gotten worse with the headaches. I'm not sure how long the hormones have been an issue, they just have gotten annoying slowly. Long, bad periods, irritability, and pms all month long. They've tested most of them and I guess they're not showing up as being bad, but they haven't checked the cortisol or the testosterone so that may be part of it, who knows. As for getting tumors because of getting older, my first tumor, in my finger, was first noticed when I was 17 and I'm only 31 and having my second ( though the first one in my head ), so I have my doubts that age is the cause. That may just be an easy way of explaining it away since they don't know what causes it. Was the surgery really painful? What were your symptoms that led them to start doing tests and eventually led to finding the adenoma? |
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herro
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my periods stopped for no reason, i was only about 42. i would only have one about every 3 mths. they kept telling me to take pregnancy test. i kept telling them i wasn't pregnant. but my breasts felt like i was pregnant...i got very hairy and got acne(just what i wanted!). i developed hump(kind of like bump between your shoulders at the base of your neck)...then i gained weight, 70 lbs in 4 yrs. also got high blood pressure. i had a couple urine corisol tests. one was high, one was ok. suspected cushings disease-which can be on a cycle. had salivary tests-one was slightly high and one was very high. there is so much i want to tell you so you know what to expect.. remember, it is your body, you know what is normal for you, don't let drs blow you off. i wasn't forceful enough. i let drs tell me for yrs that i was ok when i felt that i wasn't ok. i didn't feel like "me" anymore. so, headaches-my occasional migraines changed into a kind of constant headache. just dull ache that never went away(after my skull and sinuses healed my headaches stopped). what type of tumor did you have on your finger? i have a ganglion cyst on my thumb. um, my periods got worse before they stopped. i was pissed off all the time, sometimes i woke up angry at the world. i completely lost my temper once and hurt my hand pounding on the wall, very, very unlike me, i had always been very calm person. whew! |
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lynzie
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I have some of the same problems and some are the opposite. I have gained 40lbs. in 2 yrs, my breasts feel pregnant, too, but my peiods are extra heavy. The headaches sound like the same thing, and I'm trying not to let the doctors off the hook too easily, but I've lost some fight if you know what I mean. I was willing to fight at the beginning, but am really frustrated and want to just give up and forget all about it now. As for the tumor on my finger, they told me it was a ganglian cyst for 10 years, until it was removed and biopsied they called it that. It was a "rare benign fibroma". It grew to the size of a cocktail onion before they removed it. I am pissed off most of the time, too, so I try to warn my husband whan I'm in a "mood". It's so interesting to hear you talk about these things because it's like you're talking about me. That surgeon I saw told me that none of these symptoms were from the tumor and I should see a psychologist about them. It was all I could do not to blow up at him or burst into tears. Whan you get a chance, could you tell me more about the procedure and how it affected you afterward. Did the other symptoms go away too? I don't know if your insurance will cover it, but I would have the "cyst" removed by a hand surgeon if it's covered. The guy who did mine did it in about a half an hour and I didn't even take the pain killers because it was such a relief to have the tumor gone. |
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herro
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well, first you need to know that if there is a possibility of something going wrong then i will be in that rare 1%. Why couldn't i win the lottery??? transphenoidal means they go up one nostril thru sinus, remove small piece of skull and endoscopically remove tumor. they usually plug your skull w/mesh and repair hole w/fat(from thigh usually) if necessary. that means if there is no sign of leakage(spf) which is very rare. you spend 1-2 days in nicu, then another day in regular ward. waking up is terrible-they put this thing they call a trumpet? in your nose and they pack your nose. you feel like you are all nose! they pull it all out the 2nd day. later in 2nd day i thought i was leaking but drs weren't sure so i had to sit and let nose drip into testtube. test had to be sent away and results take 2-3 days. then i "crashed" which means my body stopped producing cortisol. another rare complication. i have been taking replacement hydrocortisone ever since. then sent me home on 4th day feeling half dead...i knew 5th day that i had spf leak and test finally came back..so..back to hospital for limber drain for 2 days. this is so there is less pressure in your skull so it can heal. if that doesn't work they have to go back in to repair hole. then i got spinal headache.and had sinus infection that lasted 2 mths. boy, i'm not very encouraging am i? maybe i'm giving you too much detail?? let me know...
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lynzie
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I have to say, that sounds aweful!!!! I can't imagine going through all that! In all the reasearch I've done they make it sound like such an easy deal. Liars! Not that everyone has all those complications, but even the routine stuff sounds yucky (trumpet?!). It is not too much info, though, I want to know the whole story, not just the sugar-coated version. I appreciate your candid response.  . It makes me feel a lot better about the surgeon saying he doesn't want to operate. Now I have some idea why. My husband has the same kind of luck you described having, so he's worried it's rubbed off on me, too. So far, though, everything seems to be fairly routine, if there is a "routine" in this kind of scenerio. Have your spinal headaches continued to be a problem, or was it just after the surgery? Why did you get a sinus infection? Was it the fault of the surgeon or because of the leakage? I am so sorry to hear that you had to go through all that. . You must have a very supportive husband to see you through all of that plus the list of things you are going through now. I hope things improve for you! Thank you SO much for talking to me about your experiences! It really helps to know I'm not the only person who's ever gone through this. I want you to know, that should you need to talk about other issues, I'm here for you, so feel free to discuss anything that is on your mind! ! |
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herro
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i am glad i can help you. sometimes surgery is an option, sometimes it becomes necessary. they thought my tumor was a prolactinoma so they put me on cabergoline(i took it 2x a wk,i would crawl into bed after and sleep a long time). it was supposed to shrink the tumor but it didn't. my prolactin level went down but after 2 yrs i had another mri. the biggest problem with a non-functioning tumor is they tend to grow more than others so they have to watch how close it gets cartoid artery and optic chiasm. mine was just touching optic chiasm. i could have waited awhile for surgery but it was definetely in my future. so i decided to just go ahead and get it over with. i thought i'd take it easy for about 6 wks and then just go back to work. ha! if i knew then what i know now i might have put it off longer. i also thouhgt about going to bigger better hospital but decided not to. partly cuz of added stress to my family. my hubby has been good but sometimes he feels the pressure of being the main "breadwinner" the sinus infection was another one of those "it doesn't usually happen". but my body couldn't seem to shake it. ended up going to ent and went thru 3 courses of antibiotics. i still use nasonex every day. so back to surgery...you're not allowed to bend lift or blow your nose for 2-3 wks after surgery. my hubby was afraid to have sex w/me after,"you might spring a leak" ha ha! he has always been by my side thru all the bad and good stuff. he keeps hoping i'll be normal again someday. he reminds me to tell him when i feel really crappy cuz it's hard to tell sometimes by looking. if i were you i'd have all hormones checked at least once a year or sooner if you feel something is not right. have mri at least every 2 yrs or right away if you start having problems with your vision. trust your body to tell you |
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herro
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what is size of your tumor? the mri they did after my surgery showed the tumor gone but a "shadow" on the other side of pituitary that needs to be watched. did you know a lot of them grow back? this is something you'll have to deal the rest of your life. google Pitutary Network Association and start reading. you can get a lot of facts there. i was really scared when i found out i had pit tumor, wasn't even sure where my pit was. do you work? kids? |
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