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lynzie
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I don't know how big it is right now, nobody's told me. What I know is what I read on my diagnosis sheet, It says it's a macroadenoma rather than a micro. So it's bigger than 10mm, but other than that it's hard to say. It's close to the optic chiasm but not touching it and I don't have any legions so that's good. It is pressing against the sinus cavity, but that's not a problem I'm told. I have done a bit of research, but I have found that different sites have different info so I'll be sure to check out that one. I just had my second mri, a close up of the pit. so I'll hopefully know more soon. I'm going to get a copy for myself and see if I can find the tumor. I didn't know where it was before this, either  . By the way, your husband sounds great, definately a keeper  . |
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herro
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yeah, i'm keeping him.our 25th anniversary this year! it's hard for regular people to read mri's but get a copy of the written reports, drs don't always tell you everything that's written on them. they just say "oh it's basically unchanged" and then if you read it you get all the details. it is also very interesting to get copies of your drs office notes, they will write things about you that you don't know about. |
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lynzie
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That's good advise! I didn't know I could get a copy of the notes. That would be interesting. Especially from the surgeon. Congratulations in advance on your 25th!!!! That's quite an accomplishment!
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herro
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i have had a few drs write that i am a pleasent, obese depressed woman. they seem to think the depression causes some of my problems. i think it is the other way around. it is always the specialists that say this. even my primary dr says it is normal for me to feel depressed with all the problems i have. she's great, she says of course you feel depressed, you are in pain all the time and can't do anything. she always cheers me up when i see her! she understands my frustration. you can request copies of your medical records, i have all my tests results and then office notes if i feel they are important. sometimes i want to go back and say "stupid, stupid dr did you listen to me?" |
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lynzie
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That's how i felt about that surgeon, too. The tumor isn't causing the headaches??? BS! They found the tumor while looking for the source of the headaches, I didn't start having headaches after I found out about the tumor! I told my husband that guy was the dumbest smart person I ever met . I think I will start requesting all the info so I can see just what is going on behind the scenes. I passed on some of your advice to a newcomer I've been talking to, she's on my profile under friends. I think she would really benefit from your experience, so if you get a chance, you might drop her a line . (I only have two "friends" in my profile, you and her) Thanks again for all the advice you've given me. I can never express how much it is appreciated! |
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herro
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i really liked my surgeon, i felt he understood things better then my endo. he even said"i bet you can tell me when the tumor started. most people know even though it takes yrs to be dx" he seemed to know more about how i felt then anyone else. and his np that i talked to all the time after surgery( i had questions every couple days) was super nice. my husband met my surgeon and he said he felt comfortable with him doing my surgery too. i have that it is the endos that seem to talk down to me, like that is very rare i don't think that is what is wrong. i asked your new friend to join us here instead of tumor group. as far as headaches go-think about it like this-there is only so much room in your skull so if there is tumor there it is crowding things. so it makes sense that it would cause headaches. my surgeon said he couldn't say my headaches would go away but it was a possibility. |
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lynzie
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He sounds like a good guy! I really liked the endo the surgeon sent me to, she is young and vibrant and very sweet. The last time I talked to her I could tell she had talked to the surgeon, though, because her tone was different and she was regurgitating his words."We usually dont think that a tumor this small causes headaches...maybe you should see a neurologist who specializes in headaches." whatever. I did read the diagnosis from the first mri, and it's a macro, not a micro, and people I've talked to w/ micros still have headaches. I don't think anyone who hasn't gone through this can really relate to what it feels like. I found this newsletter on www.pituitarydisorder.net-PDES%20Newsletter.pdf that talked about the potential symptoms and warned not to let anyone tell you that they are not caused by this. It was helpful. It made me feel better. This makes me feel way better. Just talking to people who have been through, or are going through, the same things I am is so thereputic! Uplifting, even! Thank you for that!!!!
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herro
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yeah,i saw neurologist once for memory and headaches. got the crap about depression. i feel like they all seem to have this backwards. find out the size, it should be in mri report. they told me mine didn't change couple yrs ago but i got written reports. mine was 7 mm, then 9 mm but it said basically unchanged. |
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lynzie
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The first report didn't state the size, but I'm hoping this latest one will. It would sure be nice to know. I doubt I'm going to see the neurologist. I'm not intersted in having a bunch of pain meds, and I already am pretty sure I know what the headaches are about. Since they didn't mention the size in the first report, i won't know if it has changed, but they were only 3 months apart, so I doubt it has, although my symptoms keep getting worse. I'd say a 2mm change is significant when you're talking about a tumor in such a delicate area. The drs seem to be so detatched. Yes, these are people in the pictures!!! |
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lynzie
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Ok, I got the results of the second mri and it turns out the tumor is 12 x 12 x 9 mm. Oddly shaped, I guess . Like I did with the other diagnosis sheet, I have to do some more research to figure out what some of it means. For example " the sella contains a mass which replaces the pituitary gland." Does that mean the tumor has taken over the pituitary? The next sentance states " this measures 12.0 x 8.5 x 11.8cm". I'm not sure why it says cm instead of mm, and are they talking about the gland itself or the tumor? But later on they state that the tumor is 12 x 12 x 9 mm. The good news is that it is not affecting the optic chiasm and "there are no extraaxial fluid collections or areas of hemorrhage". Apparently it extends upward into the supracellar space, so I'm wondering if that's not what's causing the headaches. I also had a better look at the results of the hormone tests that were done in Jan. and Feb. They all look like they're within range, but a couple of them are on the low side. the T4 free non- dialysis is a 0.9 on a scale of 0.8 - 1.7, and the random cortisol was a 5.9 on a scale of 4.0 - 22.0. I am doing some more cortisol tests this week, but I'm curious what the T4 non-dialysis is? Ok, I've officially vented . If anyone can help me understand this stuff, I would really appreciate the input, if not, thank you for reading my novel anyway . Hope all of you are having a great day! ! -Lynzie |
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