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02/21/2008 08:50
lynzie
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Hi! I'm Lynzie. I am 31 and was recently diagnosed with a pituitary macroadenoma. I saw my fist Neuro Surgeon on Mon. and had a bad experience, so I guess I just wanted to find out if anyone else had similar experiences with doctors they had seen.

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    tumor is adenoma
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02/24/2008 14:23
meg2689
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[size=4][/size] what waz ur bad experience?

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    tumor shrinkage!!
    off topic sorry
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02/24/2008 19:49
lynzie
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I was looking forward to seeing the surgeon for a month and a half and then he pretty much took the wind out of my sails. I had been doing a lot of research and had figured that the most likely thing for me was surgery and I was prepared for that, but I have seen nothing in my research about waiting for the tumor to get bigger. He told me to get another MRI in a year and that my headaches and fatigue are not symptoms of my condition. My research says otherwise. He also told me to see a psycologist about the symptoms like they were imagined, but I had serious headaches and fatigue for almost two years before I ever saw a Dr about it and was finally diagnosed. Plus, he was just generally unsympathetic and uninformative. I have decided to get a second opinion, but it was really hard to deal with at first. I have kept my mind off it for a couple days now by keeping busy, but before this I was optimistic that this would all be over soon and now I'm somewhat depressed that I may have been wrong.


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02/24/2008 20:24
meg2689
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My very very first experience was really bad too. I was told wen I had my first MRI that I had an anurism. Then like 2 weeks later another surgen said that was a mis-diagnosis and that it was some what of a tumor it looked like on my pituitary but certainly not an anurism. Surgery was not on of the first action he took we watched it to see it it would grow or what have you.. And finally after about oh I'd say 4 maybe 5 every 3 month check ups he finaly said we might have to go in and get a biopsy now because my last scan had seemed to him somewhat bigger. It was nothing to worry about but he said that was the next step he would like to take. We found out it was not cancerous or growing at a rapid speed and also was not able to remove it so to this day my tumor sits I'm my head on my pituitay and I go to stanford hospital and am on regular 6 month mri check ups hope this is somewhat insightful feel free to reply w/ any question or comments - hope to hear from you-- Meg

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    tumor shrinkage!!
    off topic sorry
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02/24/2008 20:34
lynzie
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That sounds really bad! It must have been hard to deal with! Were you relieved when they told you it was not an anurism or was it just as hard knowing it was a tumor? What caused them to do the first MRI? Do you have any symptoms? Has it grown at all? How does this affect your daily life? I'm just at the beginning, so I haven't really figured out how to cope yet. I thought I was totally OK with it, but it's turning out to be a little harder than I thought it would be. -L

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02/24/2008 20:55
meg2689
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Oh it was super hard for my family knowing I had an anurism...but then to find out I actually didn't is what made them upset . Because u just don't tell someone that ya kno... But after my anger subsided I found some releif in knoing it was a tumor... that's just me I mean neither r good to have but I was 16 I honestly wasnt up on the knloedge of what was better ... Any way I'm not quite sure if I remember what caused me to get an MRI I think it was because I was having headaches ...or I think it was because thankfully a family friend knew of DR. Edwards at stanford pediatrics and my mom made an appt. And he told us to bring an mri and that's why I got my first one?! I'm pretty sure it was because my dr. Asked us to bring one on our appt. We had set up... It affected my daily life soo much esp. In the begining I mean I was thinking I was gunna die and all this bad stuff.. The hardest part was I got this feeling around dr.s that I was somewhat of a puzzle for themm like they weren't sure because its so rare I guess... And the hormore block from the tumor stoped my periods.. So I wasn't menstraiting any more... Wait gain is my biggest problem I deal with.. (Wich I think comes a lilt bit from me being just sad sometimes) my HGH levels are down so I'm always tired my thyroid does not get all of its hormones ... I have another medication that my endocine dr. Said I had to take to prevent a diabetic coma from hapening all this stuff really gets to mee butt my mom always reminds me ya kno I could have it worse I could have really had that anurism or my tumor really could b cancerous ya kno so u have to think of these things to keep u goin and just make u thankful for what u do have even if its hard on u some times

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    tumor shrinkage!!
    off topic sorry
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02/24/2008 20:56
meg2689
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Oh it was super hard for my family knowing I had an anurism...but then to find out I actually didn't is what made them upset . Because u just don't tell someone that ya kno... But after my anger subsided I found some releif in knoing it was a tumor... that's just me I mean neither r good to have but I was 16 I honestly wasnt up on the knloedge of what was better ... Any way I'm not quite sure if I remember what caused me to get an MRI I think it was because I was having headaches ...or I think it was because thankfully a family friend knew of DR. Edwards at stanford pediatrics and my mom made an appt. And he told us to bring an mri and that's why I got my first one?! I'm pretty sure it was because my dr. Asked us to bring one on our appt. We had set up... It affected my daily life soo much esp. In the begining I mean I was thinking I was gunna die and all this bad stuff.. The hardest part was I got this feeling around dr.s that I was somewhat of a puzzle for themm like they weren't sure because its so rare I guess... And the hormore block from the tumor stoped my periods.. So I wasn't menstraiting any more... Wait gain is my biggest problem I deal with.. (Wich I think comes a lilt bit from me being just sad sometimes) my HGH levels are down so I'm always tired my thyroid does not get all of its hormones ... I have another medication that my endocine dr. Said I had to take to prevent a diabetic coma from hapening all this stuff really gets to mee butt my mom always reminds me ya kno I could have it worse I could have really had that anurism or my tumor really could b cancerous ya kno so u have to think of these things to keep u goin and just make u thankful for what u do have even if its hard on u some times


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    tumor shrinkage!!
    off topic sorry
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02/24/2008 21:15
lynzie
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It sounds like you've been through a lot more than me. So far, all my horomone levels are normal, except I have to do some more tests for Cushing's Disease. I've gained a lot of weight, too, but I don't know if it's from the tumor or from being tired and not doing as much and eating instead. I think I was in shock for the first month and a half and now that reality is setting in I'm back and forth between depressed and motivated to get through. Do you get moody? Irritable, I mean? I feel bad because sometimes I am and I am not the best wife or Mom. My kids are so great, though. I went to my first enocrinologist appt. on my daughter's 9th birthday, but I had to drive 200mi to get there, so I missed dinner w/ her and the family, but when I told her I had a dr appt, she asked if it was for my headaches and I told her yes and she was soo happy and gave me a big hug. i haven't told them what is wrong yet, but it is affecting them too. I am thankful it's probably not cancer and that it's not worse hormonally, I've just never dealt with something over time, it's always been fix it quick and move on. If the next surgeon tells me the same thing, I'll have to re-evaluate how I'm dealing with this. You are a strong person for getting through this the way you are! -L

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    tumor is adenoma
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02/24/2008 21:36
meg2689
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Oh wow I used to get sooo irritable and just cranky!! It was bad... But yeah I get through it some how surgey was crazy being a jr. Girk In high school having the front part of my head shaved doesn't make u feel to good.. But ne way what neuro did u see. Where was he located and where is ur endocrine at.. I'm actually going up to stanford to see my endo in stanford on friday maybe I can give his number he's reall awsome he's on the web too at stanford hospital web site ... Do u find ur self thirsty a lot like I was telling u I was?

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    tumor shrinkage!!
    off topic sorry
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02/24/2008 21:41
lynzie
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Thank you, Meg! I is so good to talk to someone who understands! It sounds like you have been though a lot more than me and you have been really strong! Keep in touch, and have a really wonderful day tomorrow!! -L

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