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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. 53 People

    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, 2014

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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 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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    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, 2014

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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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    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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    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, 2014

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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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    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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    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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    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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    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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    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 2 Responses May 29, 2012

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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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    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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    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 41-45, F 3 Responses Feb 28, 2014

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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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    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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    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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    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 22-25, F Aug 9, 2013

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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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    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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    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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    Related Experiences

    I am actually an extrovert and i have 0 friends due to my SA I can't talk properly with others. been like this since childhood... i could cope with it for few years... but recently...
    crazytank crazytank 26-30, M 2 Responses Aug 1

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    Well after 2 months I'm finally going to see my boyfriend for visitation for my very first time I know I'm going to get super emotional and well I'm excited to see him...that's all...
    cloverxx cloverxx 16-17, F Jul 31

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    (1) I'm 27-years-old. (2) I have no tolerance for ignorance and stupidity. (3) I struggle with mental illness. (5) I cannot sleep without a fan. (6) I'm 6 feet tall, 205 pounds. (7...
    deleted deleted 26-30 1 Response Jul 31

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    So now I'm 18. Cool. Now I can finally have sex with the man I like
    xoValentina xoValentina 18-21, F 7 Responses Jul 31

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    I have three cats. Two of them are kittens, and the other is fully grown.
    deleted deleted 26-30 1 Response Jul 31

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    Good night everybody have a blessed weekend😊😊😊😊😊❤️
    deleted deleted 26-30 Jul 31

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    simple, they have the compassion part of they're brain removed for a implant that triples sadistic nature so they enjoy torturing people more
    Azureal Azureal 26-30, M 1 Response Jul 31

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    Tethered inside my mind with malice a mere glance from within I see from the eye of my window the freedom outside of it the place I long to be The horrors that manifest from...
    LadyGallivanter LadyGallivanter 41-45, F 1 Response Jul 31

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    There is a woman whom I dislike intensely. I thought about making a voodoo doll that looked like her. (Never mind the fact that I haven't sewn anything or done a craft project in...
    SmartKat SmartKat 46-50, F 14 Responses Jul 31

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    I've lost everyone who cared about me for real I don't have any friends that look forward to talking to me im just all alone left with the monsters inside my head
    butterflybaby123 butterflybaby123 13-15, F 4 Responses Jul 31

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    I have rule 34 aka drawn **** on my phone
    deleted deleted 26-30 2 Responses Jul 31

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    I started experiencing my symptoms with Psychosis at around 17. I could never sleep as a child and grew up in a abusive home. Mainly it's paranoia that gets me in trouble. I do...
    deleted deleted 26-30 2 Responses Jul 31

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    Some bold women do make ups on their faces on the moving train while seated. They always have a set of small mirror and items. Except this woman I saw apparently had no mirror but...
    katsuobushi katsuobushi 36-40, M 3 Responses Jul 31

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    I have alopecia, and I am proud.Having bald patches doesn't make me any less beautiful,or any less human.People may stare, people may laugh,but I show my head proudly.Why should I...
    sillyoldme sillyoldme 18-21, F Jul 31

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    I am occasionally a bad girl. I pick up out of town business men, have a date and very good sex, and then I go home and generally don't see them again. Everyone is happy.
    deleted deleted 26-30 8 Responses Jul 31

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    i miss you david its been years since we have seen eachother or talked always know i love u >always & forever< this song i dedicate to you (in case) by demi lovato ?
    sisiyah sisiyah 22-25, F 2 Responses Jul 31

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    I don't care for dogs. A nurse that I'm not well acquainted with was telling someone that her dog ate her fiancé's passport causing them to choose someplace domestic for honeymoon...
    deleted deleted 26-30 4 Responses Jul 31

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    Im gonna show somebody that they can trust again cuz i want to learn to trust again. lead by example! life hurts when u open up and get hurt so bad but i have to try to trust again...
    JennaRee JennaRee 13-15, F 2 Responses Jul 31

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    So I am just diagnosed and freaked out. Was told I have 58-62 episodes an hour that I stop breathing and at times I get hypoxia because my oxygen drops to 70% and if I don't wear...
    mslvr01 mslvr01 46-50, M 2 Responses Jul 31

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