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  • I Have Pituitary Tumor. Surgery? Please Talk To Me

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    Old 04-24-2005, 05:33 PM   #1
    BetterDayz's Avatar
    Join Date: Apr 2005
    Location: USA
    Posts: 2
    BetterDayz HB User
    Unhappy I Have a Pituitary Tumor. Surgery? Please Talk To Me!

    Hello, I was diagnosed with a "PITUITARY MACROADENOMA" (Pituitary Tumor) back in late November, 1998. Long story short, I STILL have this tumor, and it has grown to twice the size. Symptoms I have, or have had, include;
    Severe weight gain-70 pounds, headaches, dizzyness, virtigo, blood pressure changes,depression,anxiety, vision problems, minus-of mentral periods, high prolactin levels, and low estrogen levels. Not to mention the tremendous amount of stress this has all caused me. Currently, I am in the process of going to "SEVERAL" specialist Doctors; Endo, Neuro, Eye doc, and Neuro-surgeon, for further opinions as to what I should do now? So far, I have had 3 Doctors tell me that I need to get this Tumor Removed. The dreaded "BRAIN SURGERY".
    I have had 6 MRI brain scans done already, and am scheduled for another MRI(7th) brain scan "TOMORROW" morning. ( APRIL 25, 2005 ) I have to go see a Neuro-Surgeon (Andrew Metzger) on: ( APRIL 28, 2005 ). He will be reviewing ALL my past MRI BRAIN SCANS, and records, and giving me his opinion. Which sounds more than likely brain-surgery at this point. I have been told in the past, that this tumor is a secreting tumor? And NOW, I am being told that this tumor does NOT seem to be a secreting tumor. And is more than likely a "NON-Secreting" Tumor? Which should be taken OUT! "REMARKABLY", my last eye exam (and) visual fields tests ( APRIL 12,2005 ) come back normal. In fact, I still have 20/20 vision! Which has AMAZED all the Doctors!!!! Since I have had this Tumor for more than least 7 years. And, I have had some vision problems in the past due to the tumor. Needless to say; I AM VERY VERY SCARED!!!!!!! (Brain Surgery OMG!)
    I have NOT had a period (since Jan 2005)) in over 3 months! My Neuro Doc put me back on meds ( DOXTINEX) to try and help keep the tumor from growing any larger. The tumor is causing stalk compression.
    Also, my Neuro-Doc has prescribed for me to take doses of "Synthetic Hormones" therapy (Provera) for 10 days each month. This is to MAKE me have a period. But, I DO NOT want to take them. Since Synthetic Hormones have been known to cause various types of Cancers. I am currently just taking the DOXTINEX medication; (Dopamine Inhibitor). Thus far all things point to me needing to have Brain Surgery to remove the Tumor. It's NOT going away with meds! Doctors claim, that IF this had been a SECRETING tumor, then, the Doxtinex meds should have shrunk it down to NOTHING! Just not sure who to trust to do this very sensitive and scary Brain Surgery????? Has Anyone here ever heard of a Doctor "ANDREW METZGER"? (Neuro-Surgeon) Has he done Brain Surgery on anyone here????? HAS ANYONE HERE HAD THIS KIND OF BRAIN SURGERY?????? PLEASE REPLY AND TALK TO ME.
    I need all the help and re-assurance I can get!!! Bless you....
    Afraid in New Mexico

    Last edited by BetterDayz; 04-24-2005 at 05:44 PM.

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    Old 04-28-2005, 08:14 AM   #2
    Join Date: Apr 2005
    Location: north yorkshire(england)
    Posts: 62
    dawnies HB User
    Re: I Have Pituitary Tumor. Surgery? Please Talk To Me

    Hi there, saw your plea on the healthboard and thought i would let you know that my mum had this exact same tumour about 4 years ago. Have they explained to you how they will remove it because my mum had hers taken away through her nose which is less invasive and she was fine.Good Luck

    Old 04-29-2005, 05:33 PM   #3
    dizzypit8149's Avatar
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    Location: ohio
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    dizzypit8149 HB User
    Angry Re: I Have Pituitary Tumor. Surgery? Please Talk To Me

    Hello, better. I was reading your post. You sound so simular to me. Well my story started in Jan of 04. On a Sunday mornign I could'nt walk. Within 2 weeks I gained 20 lbs,started getting really dizzy,severe headaches,rash on my arms and hand,ectreme fatigued. Well my family suggested becuase of such a strong history of MS in my family and because of the rash the I may have Lupus. so I went for a MRI and she called me later that night and told me that I have a mass on My Putuitary gland and she reccomends that I see a Neurosergeon. So within a week I went to Pittsburgh and had all kinds of labs done and I had very low Growth hormone all of my other labs came back high normal range but to the doc it didnt matter . Now mind you for over 2 years I havent had a period. Well I continued to see him for a bout 3 months and he had me go so far as to get pre op testing and come down scheduling for surgery. I also had 3 visual field test done and I basically failed all of them. Well my husband and I went down for my apt and he tells me that he now dont think I need surgery to come see him in a year. So all of that time was wasted. Then I started going to Cleveland Clinic and got a second opion and was told that none of my symptoms are from this cyst. That I should see another endo which did. Well again all kinds of blood work and high normal lrange excepte growth hormone low and DHEAS extremly high. Well then I was diagnosed with PCOS and told to contiue to take birth control and put on metformin. Well come to another doc and find out its a macro and to come back in 6 months for another MRI to see if it has grown. WEll since then I have been diagnosed with Meniere's ( vertigo), bipolar,Pcos,insulin resistance excessive weight in mid section,hypoglycemic, and this pituitary cyst that I cant get any answers for . Now as far the hormones and the visual fields and allof my sympotoms dont have anything to do with this,. All of the doctors I have seend contradict themselves because in their office the info there says about these symptoms and all of the research I have done on the internet all boils down to this . Hope things get better for you

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