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I Have Craniopharyngioma

Craniopharyngioma anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Craniopharyngioma. You're not alone. 50 People

    Short Childhood

    I was seven and it all started at night. I had gone to bed, but woke up with a terrible headache that would not go away with aspirin. My Mother took me to the emergency room where the doctor did blood work and the sent me to get a cat scan done. After getting the results he came...
    Unicorn335 Unicorn335 22-25 2 Responses Feb 5, 2012

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    Craniopharyngioma At Age 33

    I was having trouble with my vision in the fall of 2011. Eight days after going to a an optometrist at a Walmart, I eventually had an MRI in October 2011 revealing a 3 cm diameter craniopharyngioma that was between my pituitary gland and optic chiasm. The surgeon at Loyola in...
    mslegend mslegend 36-40 2 Responses Apr 2, 2013

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    Cranio Kid

    When I was 10, I started getting headaches and double vision so my mother took me to the optician. They noticed there was something behind my eye. 2 weeks later after multiple scans etc, we found out it was a Craniopharyngioma the size of a satsuma. 2 months later the removed...
    jlf22 jlf22 18-21, F 1 Response Jul 27, 2013

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    One of the few without surgery.

    .. I was diagnosed with a craniophryngioma at the age of 2. I'm 23 now. Shortly after I was diagnosed, I was diagnosed with Acute Lympoblastic Leukemia. I was battling cancer and that was the main concern at the time...since there was much debate whether the mass was a mature...
    tan28 tan28 22-25, F 1 Response Jan 17

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    I was diagnosed with craniopharyngioma

    when I was 16, I am now 27. I had 2 surgeries and radiation treatment. Little did I realize how much my life would change during the healing process. Aside from all the negative effects from the radiation, I am happy to be alive!
    BooRadleyMoment BooRadleyMoment 26-30, F 1 Response Jan 7

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    I was diagnosed with a craniopharyngioma in

    July, 2013. I had surgery to remove it and developed lots of complications resulting in 26 days in ICU. Since the surgery, I have been dealing with a deficient hormone system. I take hydrocortisone, synthroid, estrogen, vitamin D, calcium, magnesium and potassium. There's...
    lteed lteed 36-40, F 3 Responses Feb 28

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    My Son

    my son had an MRI on Oct 22, 2010 were the found his tumor.He was 9 years old, I was 38 weeks pregnant. They admitted him to the hospital do to the size surgery was our only option. they wanted to do surgery that night but didnt have enough staff on a friday night. so on monday...
    mnmgirl78 mnmgirl78 31-35, F Dec 29, 2012

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    I'm a 49 year old male diagnosed 13 months ago

    with an inoperable Rathke's Cleft/Craniopharyngioma. I had known something was wrong for awhile. Daily migraines, pressure in my eyes and head, blurred vision, dizzy, vomiting, memory lapses and more. I was first misdiagnosed with depression and PTSD and put on drugs but showed...
    Kapoyk Kapoyk 46-50, M May 8

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    Hypopituitarism After Craniopharyngeoma Surgery

    Dear all, our story is similar to yours... It happens 5 mouth ago. No we have big problem with pulse rate. Its always 100-130 beats per minute. Do you know what can cause it? Thank you for all ideas.
    lauryte lauryte 36-40 1 Response May 28, 2013

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    My Little Angel

    My son was diagnosed with sellar mass, possibly craniopharyngiomas when he was 11-months-old. By reading n on thru the internet, I can say that he might be the youngest who has this tumor, but the luckiest because we found it out early. He had bacterial meningitis when he was 4...
    mamayuxx mamayuxx 22-25, F May 19, 2013

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    Recently Diagnosed

    Hello, I was recently diagnosed (June 2011) with Craniopharyngioma. I am in my 50's but was told I have had it for many years. I was having motion/pressure headaches so my family doctor scheduled an MRI. I guess the tumour could have been there at the current size for a long time...
    saturn57 saturn57 51-55, F 6 Responses Sep 12, 2011

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    My Boyfriend

    My Boyfriend has craniopharyngioma he got it when he was a child, he told me he may not be able to have children. The doctor told him this a couple of years ago.I love him so much, but i don't know if i can be with him if he can't have children.He is in his early 30's but he...
    janey45 janey45 22-25 2 Responses Sep 16, 2012

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    I Have A Craniopharyngioma

    I was diagnosed when I was 16, I am now 20 and have had 2 operations and radiotherapy. I had suffered from migraines and noticed I had blurred vision in the outer corners of my eyes, which the optician sent me for a scan for. That was when they found it. I have struggled with my...
    EmmaScott22 EmmaScott22 18-21, F Aug 9, 2013

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    My 17 Year Old Son Just Diagnosed

    My 17 year old son has been having headaches for a year or more and has been treated for them as migraines. Last week he reported he had a spot in his eye. The eye doctor requested an MRI and the diagnosis came back as Craniopharyngioma. We are getting a work up of his hormones...
    searchingtom searchingtom 56-60, M 1 Response Feb 2, 2013

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    I Was Diagnosed At Age Seven With A Craniopharyngioma Brain Tumor.

    I was diagnosed with Craniopharyngioma when i was seven years old. I am now 17 years old and im still facing a lot of difficulties because my pituitary gland was damaged. I had two surgery's to remove my tumor. The first surgery was an emergency surgery just to remove half of the...
    14jlopezj 14jlopezj 16-17, F 2 Responses Jun 1, 2012

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    A Gift From God.

    I was married in1994 got pregnant in 1995 gave birth in 1996. The minute I was pregnant I was vomiting non stop night and day. I could not eat, sleep, for the whole pregnancy. I gained 5 1/2 pounds my baby weighed 6.9 pounds. Towards the end of my pregnancy, I was losing my eye...
    ISegrest40 ISegrest40 41-45 2 Responses Apr 9, 2011

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    Craniopharyngioma

    I really feel like an old timer now after reading some of the other posts. I went into my eye doctor in 1975 when I was 11 years old after getting headaches and blurred vision. I was immediately transported to Mass. General Hospital and had surgery the next morning. It was a...
    ric2112 ric2112 46-50 1 Response May 29, 2012

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    "a Scarey Time"

    Hi, I am 8 years old.  I started having really bad headaches during the night that I would have to wake up my parents to give me Motrin which did not really help.  Then I started vomitting  in the mornings when i would wake up. My mother took me to 2 different doctors and they...
    cranio cranio 13-15 2 Responses Apr 10, 2012

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    Unlucky But Going Strong :d

    Hi my name is Sam an im am 17. When i was 11, i started to get headaches, which then got progressively worse over the space of around 3 months. My parents then decided that i should have an MRI scan just to see if everything is okay in my head. As you can guess, it wasn't. I...
    samhewi samhewi 16-17 8 Responses May 18, 2011

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    My Little Princess

    my daughter is 5 years old, we live in india. at the middle of 2011 she started compalining of headaches, since i wear glasses we assumed it could be a vision problem. as it turned out, she had to wear glasses due to weak eyesight. the headaches would continue sometimes mostly in...
    vinisthename vinisthename 31-35, F 1 Response Jan 8, 2013

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    I Was Diagnosed When I Was 10

    when i was ten years old i was diagnosed with a craniopharyngioma. i am 26 years old now. but when i was ten i started having alot of nausea and vomiting and headaches and after a ton of inconclusive tests the doctors finally decided to do and mri where they found the tumor. i...
    gothope85 gothope85 26-30, F Jun 5, 2012

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    My Story

    Hi I'm 17 years old and I was diagnosed with a craniopharyngioma in December 2008. When diagnosed I was sent straight to the southern general hospital in Glasgow for an emergency operation to put a drain in my head as there was too much fluid pressure building up. When they put...
    Zoelittle Zoelittle 16-17, F 3 Responses Mar 8, 2011

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    Craniopharygoima

    Hello,my husband has craniopharygoima. He found out in Jan 2012 after going to the er for headaches. He did not have any insurance so it took six weeks to get proper medical treatment. The doctor he saw at the emergency room when he took real sick send him to MD Anderson Cancer...
    blade72 blade72 36-40, M May 23, 2012

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    Help

    Just this past sunday, my partner of 3 years who I live with had a seizure. It was the first time he has ever had one. We took him to the hospital and found he Craniopharyngioma. The neurosurgeon told us he would need to have surgery to remove it and then undergo radiation...
    Kmatt21 Kmatt21 22-25, M 1 Response Jun 12, 2013

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    Related Experiences

    I have cancer and am drowning in bills. I have another surgery on Oct 22, 2014 and then radiation treatments and it is so hard to try to recover and be healthy and strong with the...
    butterflyprincess666 butterflyprincess666 26-30, F 1 hr ago

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    Me and my ex broke up yesterday. We also have a 2 week year old son. I'm 18, not that It's relevant to this post. I'm always going to be in my son's life, I aspire to be the best...
    ADifferentDude ADifferentDude 18-21, M 50 mins ago

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    I have a pretty weak bladder. So if I don't make sure to go before bed, sometimes it just happens. And anytime I laugh I have to keep it in check or my bladder will decide it's...
    rubyf rubyf 18-21, F 1 Response 2 hrs ago

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    When I was younger, I loved older women. However, as I have gotten older I have begun to like younger women. I am 25 and usually don't like to date women older than 20. I think it...
    bktaylor1989 bktaylor1989 22-25, M 2 hrs ago

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    Does anyone have anxiety and smoke to help relieve it? I smoke cigarettes and I'm trying to stop after years of smoking, I get really bad anxiety when I start to withdrawal. It...
    mattcom mattcom 22-25, M 1 Response 2 hrs ago

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    Add me if you have it! I am 'TegsDaUnicorn' :DDD
    0LOvEsHaTeRs0 0LOvEsHaTeRs0 13-15, F 2 hrs ago

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    Ive been taking lexapro for almost 4 months; stopped taking them a couple of days ago and now i feel woozy, light headed and angry some of the time. I get these feelings of muscle...
    xsmall xsmall 18-21, F 1 hr ago

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    He's a cute *** sexy dude and I love him, we've been talking for about 2 weeks now on here and we've FaceTimed a few times...I have a crush on him...but I live here in vancouver...
    Nathanlucky021 Nathanlucky021 13-15, M 1 hr ago

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    I've had sex in a car 3 times...actually once was outside the car in a parking lot. I also had sex in my car and was almost busted by the cops. It was so hot!! I still have the...
    askmeplease askmeplease 41-45, F 2 Responses 1 hr ago

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    I have been having dreams about a former crush for about 4 months now. The dreams started right around the time I broke up with my last boyfriend (a different guy). I haven't had...
    amazingcuzitis amazingcuzitis 18-21, F 3 Responses Sep 1

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    Last week I saw my husband for the first time in almost 3 months. This weekend I went to his house again and spent a little over 24 hours with him. I hate being separated but I am...
    lambchop1990 lambchop1990 22-25, F Sep 1

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    I have long hair because my mommy won't let me cut it. Due to the fact she was brought up (well, learned it from her parents because she was born in the US) in odd freakish culture...
    ChanelLove12 ChanelLove12 16-17, F 2 Responses Sep 1

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    I first laid eyes on him when I was a freshman in high school. He was one grade ahead of me. He was tall, fit, and very attractive. He wasn't dressed like the other guys at our...
    amazingcuzitis amazingcuzitis 18-21, F 1 Response Sep 1

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    In my life have trouble reading body language and peoples emotions tend to avoid people
    fluke19 fluke19 26-30, F Sep 1

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    And through Asperger syndrome, I met a good friend on this website. Since then, we have met in person and he and I are beyond best friends; we are true brothers and always will be...
    chubbystringbean chubbystringbean 22-25, M 1 Response Sep 1

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    They say within the first 5 to 10 minutes after waking up you tend to forget 95 percent of your dreams. This has only applied to me in rare occasions as I seem to vividly remember...
    sash227 sash227 26-30, M 1 Response Sep 1

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    I'm totally serious about this but sometimes I have dreams and then later on they become reality. It creeps me the hell out lol. When I dream of crazy obscure things and then later...
    OhGK OhGK 26-30, F 3 Responses Sep 1

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    Just watching the news or browsing a social media site. Working at my retail job. And this whole celebrity nude scandal thing just fuels my hate for the human race. A lot of these...
    ValhallaAwaits ValhallaAwaits 18-21, M Sep 1

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    Loosen up and enjoy the peace of mind that includes realizing your supper designs are cared for for your period of one's stay, and that your credit card can remain tucked absent...
    Wendolynce106 Wendolynce106 31-35, M 1 Response Sep 1

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    Amazing two bedroom villa located in Assos with private infinity pool and Jacuzzi in a intimate placing benefitting from fantastic sunset sightsWill you be ready to discover the...
    Willy52yt Willy52yt 31-35, M 1 Response Sep 1

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    all i want is to get married be an amazing husband have a big beautiful family and be an awesome dad =) if this sounds like something you would be in to or up for and want to get...
    o3118152 o3118152 26-30, M Sep 1

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    I can't wait til I get out of college so I can have babies. So impatient!
    teawithharry teawithharry 18-21, T 1 Response Sep 1

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    Yes, I do, and quite often! One dream I had a long time ago was that there was some Jazz/Blues type music playing, and I clearly remembered the lyrics. I actually woke up and...
    Cristofori Cristofori 41-45, M 3 Responses Sep 1

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    She has been with me through thick and thin and understands what I say it what I'm thinking at all times. I wouldn't choose anyone else to be stuck in a situation with. We have no...
    ValhallaAwaits ValhallaAwaits 18-21, M Sep 1

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    So I've been thinking about the summer and my best friend houston. I'm in love with our friendship and I wish I could have a boyfriend like him. He and I cuddle and kiss and go on...
    xoxohayley xoxohayley 18-21, F 2 Responses Sep 1

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    For all those who do not know what tsundoku is, it is an act of buying books and letting them pile up unread. It maybe an act of compulsive hoarding since I am not willing to...
    denkenistdanken denkenistdanken 18-21, M Sep 1