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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

    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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    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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    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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    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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    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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    "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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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 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'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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    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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    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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    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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    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 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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    Related Experiences

    Please help. I'm currently experiencing dark thoughts, dark thoughts about just running away. I love all my Children but they have no respect for anything I have ever done for...
    RockingLikeAFetus RockingLikeAFetus 31-35, F 1 Response 1 hr ago

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    At first he happen to be caught in her glance, she had not noticed him her eyes were only focused on a friend as they whispered. Then slowly his existence started to grow, her eyes...
    Moonlight94 Moonlight94 18-21, F 5 hrs ago

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    Apparently I have an accent or speak odd to people. Apparently I don't pronounce my words correctly... I guess sometimes they don't come out correctly. Like haven't = 'aven't or he...
    InvaderGashloog InvaderGashloog 70+, F 4 Responses 5 hrs ago

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    I have liked this girl for 4 and a half years now. Actually it's much passed "like". I've had so many chances to make a move on her, but I was to cowardly to do so. I was too...
    yoomyman yoomyman 18-21, M 5 hrs ago

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    I hate my aunt tomorow she is going to maried but i have to go eventhough at monday i"m going to have last semster test i mean what the hell her wedding going to take 2 days in a...
    reginacs reginacs 16-17, F 1 Response 4 hrs ago

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    It borders on a year now, that I have had nightmares almost every night. My mind has been plagued by insecurity... And with it, came the nightmares. I wish I had the typical...
    Lullacus Lullacus 22-25, F 1 Response 3 hrs ago

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    Has anyone ever faced discrimination for having a tattoo? I have one down the side of my forearm, just some dainty writing (lyrics). Anyway, I had a job interview one hot day a few...
    Enna87 Enna87 26-30, F 2 Responses 1 hr ago

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    A few : -I don't know how to forgive, even if I say I forgive someone. I always have this passive aggressive behavior towards you if you've got on my bad side -I would NEVER cheat...
    akaShaun akaShaun 16-17, M 1 Response 54 mins ago

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    to be honest i don't know how my life got this far off track. one minute im happily married the next i going thru a divorce and living with this "gift" that she gave me.... forever...
    livingpositively livingpositively 22-25, M 47 mins ago

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    Sad predicament I know, but when I look back, I can see that the happiest times in my life have always been when I was between being in love. I felt like "Yay! I'm finally over...
    aag311 aag311 41-45, M 1 Response 6 hrs ago

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    I have horrible anxiety. It's with me all day every day, never goes away. Mind is racing, chest is pounding, I can't concentrate most of the time. It sucks. I usually just act like...
    barbee0 barbee0 13-15, F 6 Responses 6 hrs ago

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    Yes I do it makes me upset with myself i have been able to cope with it but sometimes I burst into a firecracker and I just feel terrible. :(
    yeahis18 yeahis18 18-21, F 6 hrs ago

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    I'm a cutter, and burner. When I'm alone with my feelings I have to let them go by just one cut or one small burn. That's my secret, can you keep it?
    LenaBena1430 LenaBena1430 16-17, F 1 Response 4 hrs ago

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    Facebook/Twitter/Instagram: People who write daily novels on their statuses. Same story every day. Usually somewhere along the lines of counting their daily blessings or how much...
    bombchu bombchu 22-25, F 4 hrs ago

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    What are rights? Everyone loves to spew out that they have rights from their slobber soaked crumb ridden mouths. Like George Carlin said, you don't have rights. You have privileges...
    ValhallaAwaits ValhallaAwaits 18-21, M 2 Responses Oct 27

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    First Indirect Rejection When I was in 5th grade I had a crush on this guy in my class. I was and still am the nerdy quiet crazy girl who's always reading manga or doodling anime...
    Toriko Toriko 13-15, F 1 Response Oct 27

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    My confession is that I have cut before and am not proud of it. It happened so fast, just an impulse to feel something.
    ForTheFallen ForTheFallen 22-25, M 2 Responses Oct 27

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    I have and still do wear diapers from time to time for recreation although they make me feel a bit safer on long car trips. So I have urinated in them and they turn me on. I'm not...
    ForTheFallen ForTheFallen 22-25, M 2 Responses Oct 27

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    I have been told that I am needy but that is because I have got attachment issues and it really effects my relationships
    deleted deleted 26-30 Oct 27

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    Well not a blankey but a huge t shirt! I can't sleep without it. I even named it Mogar. I often don't wash it for weeks. It's smelly scent is what really gives me the sense of...
    itachiuchiha07 itachiuchiha07 18-21, F 2 Responses Oct 27

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    It is a funny story of one of my 2nd or third cousin. She has a step brother. His father married her step mother after her mom had passed away as she was only about 4 or 5. After...
    Lolime Lolime 22-25, F 6 Responses Oct 27

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    I have been experimenting with bdsm and some other non Christian things but I'm proud to say I found the path and I'm back with my pack and I re accepted Christ into my heart just...
    create1908 create1908 18-21, F Oct 27

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    Anxiety is a prison to me. I can't have a normal life because of it. I hope at some point I can handle it someway somehow.
    riddlesmile riddlesmile 31-35, M 3 Responses Oct 27

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    I have a crazy old OFRN pitbull. My pit is seven months old and his name is krueger.
    riddlesmile riddlesmile 31-35, M 1 Response Oct 27

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