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. 56 People

    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

    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

    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

    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
    3 Responses Jun 1, 2012

    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

    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

    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

    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
    4 Responses Feb 28, 2014

    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

    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

    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

    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

    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

    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

    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
    26-30, F
    May 19, 2013

    "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

    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

    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

    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

    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
    51-55, M
    May 8, 2014

    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

    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

    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

    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

    Related Experiences

    Part VI: It was the night before my first year of high school. I was walking around the complex which was something I hadn't done much since I met him and was avoiding him. I knew...
    verylostcause verylostcause
    16-17, F
    Mar 30
    I want to adopt twin baby boys. I have older twin brothers but they were 3-4 months early, which only let them live a very short life. Since I was unable to grow up with them or...
    MeeeKazz MeeeKazz
    18-21, F
    Mar 30
    Today is World Bi-polar Day. I wonder how many people with this illness have gone undiagnosed or even misdiagnosed?
    chocomint chocomint
    51-55, F
    1 Response Mar 30
    I am not the man I was 3 years ago. In 2013 I was the picture of health. I was 46-47 years of age and no health issues at all. In 2014 things changed for the worse. In February I...
    frankred frankred
    46-50
    Mar 30
    I have this reoccurring delusion that people aren't speaking English, I know it sounds crazy but for some reason it tends to bother me and I begin to believe it. Basically my worry...
    Loganh1216 Loganh1216
    13-15, M
    1 Response Mar 30
    Rick sips his glass of vodka and stares at the bartender. Rosemary walks up to him and slams a pack of documents on the table. Rosemary: what is this Rick? Rick: what am I...
    LeahLovee LeahLovee
    70+, F
    4 Responses Mar 30
    I think I'm falling for him! so i only met him 9 months ago when i started my job, he works there too, i thought nothing of it until about 4/5 months ago where we finally had a...
    BarbiesAreFake BarbiesAreFake
    22-25, F
    Mar 30
    I've asked this before I know but I need to ask it again bc I need help. Lol I have really long fairly thick hair-to my butt. My problem is when working out or working out around...
    AngelNThePit AngelNThePit
    70+, F
    6 Responses Mar 30
    So I set up a bucket list on my Pinterest account..I have loads of travel and life goals.
    deleted deleted
    26-30
    Mar 30
    On 21 February 2006, Canadian Paul Marek published on his blog Celestial Junk an article titled "Why the Peaceful Majority is Irrelevant." In passages such as the following, Marek...
    pdqsailor1 pdqsailor1
    51-55, M
    Mar 30
    I thought it was Que mario Ermanno, I am in love with. It is Mario, himself. So.. I have to walk away.. He is Hotttttttttttttt !!! But, I would love to invite Mario to be my Date...
    fuckuprincessanyajaki fuckuprincessanyajaki
    41-45, F
    1 Response Mar 30
    I met a guy he came back once other time, I knew his way that he would leave! It's called being a flaked. Smell the BS a mile away however last time he came back so now I've...
    deleted deleted
    26-30
    Mar 30
    I have been in a relationship for about 10 months. I was diagnosed on April 1st of last year with herpes. My girlfriend accepts me for it... But Because I have herpes I feel like I...
    anxi0us anxi0us
    22-25, F
    6 Responses Mar 30
    Both A Heaven & Hell. Most would find stepping into a jailhouse a curse, a personal hell, a punishment to be avoided at all costs. While others have the ability to see it as a...
    Missluhvlee Missluhvlee
    18-21, F
    Mar 30
    So in order to know your penis size do you have to measure it or is there like a system? Like bras?
    DiamondAuthority DiamondAuthority
    18-21, F
    1 Response Mar 30
    This never fails! I am always happily shocked by the generosity of people when it comes to donating to a charitable cause! I am participating in my local APDA Optimism Walk for...
    LifeinWoodinville LifeinWoodinville
    41-45, M
    Mar 30
    ...And I don't know what to do about it. I don't know how to get better, and I don't know how to talk to my friends, family, or doctor about it. I feel like they just won't get it...
    onemoreusername onemoreusername
    18-21, F
    Mar 30
    I was diagnosed with this several years ago, and am fortunate (so far) that it only shows up periodically. A backscratcher works fine, or a bristly brush. My dermatologist...
    emmi331 emmi331
    46-50, F
    Mar 30
    0.0 I want to thank ep tbh . if it wasn't for ep I wouldn't have met so many amazing people . EP actually helped me a lot believe it or not , I still complain a lot but after ep I...
    LovelyGorillla LovelyGorillla
    16-17, F
    Mar 30
    Some of you may have read my previous posts about my greyound, Buddy, who came into my life and brought light and laughter Sadly he had to be euthanised last summer and so Bo came...
    Riffster Riffster
    51-55, M
    Mar 30
    I have a few websites I have created over the years. My most recent one, which is still being developed is a site that is to be similar to experience project, yet not closing, and...
    dcDiana dcDiana
    22-25, F
    12 Responses Mar 30
    me and him are soo different. first of all I am 15 and he is 13, we share a bunkbed and rarely fight but its like, we are soooo different. He likes to show off his body, I don't...
    michiganlad michiganlad
    13-15, M
    Mar 30
    Although I had always written, I adde no men I still get Enquiry Therefore, I have now made a decision, because I'm extremely annoyed. I'm going to block every guy. I hope that it...
    MistressNavel24 MistressNavel24
    22-25, F
    Mar 30
    I have 6 sisters and 1 brother. Most of us are adopted
    DiamondAuthority DiamondAuthority
    18-21, F
    1 Response Mar 30
    I have like four nieces. But one, her names carleigh, I think she's autistic. It's ok though. She's So cute
    DiamondAuthority DiamondAuthority
    18-21, F
    1 Response Mar 30
    I don't have friends to talk. I don't have a best friend to tell her about how I feel. How alone I am. There is no one.
    Lucifer63 Lucifer63
    16-17, M
    Mar 30
    My father. Unfortunately. Not proud to say that he is now estranged to me. I can see now that my family's life has been impacted, spoiled and to some extent ruined by him over many...
    TValentine TValentine
    56-60, M
    1 Response Mar 30
    The Dr recently put me on Haloperidol for long term chronic insomnia. The side effects seem really scary. This drug is to treat Schizophrenia & Bipolar. I do not have either of...
    Lornyjane Lornyjane
    41-45
    1 Response Mar 30
    I suffer from PTSD and am currently owner training a service Dog to help me with it. while its a help to thouse who have served us the programs who help people with dogs will only...
    Lokisvixen Lokisvixen
    18-21, F
    1 Response Mar 30
    16 Little Things You Can Do For Someone With AnxietySaw this article on Buzzfeed yesterday and thought it could come in handy for those who know somebody that lives with anxiety...
    iSpyce iSpyce
    31-35
    Mar 30
    I had pick some names for my future kids that I want to have 2 boys and 1 girl or 1 boy and 1 girl when I get older if me and Michael are still together
    michaelXelizabeth michaelXelizabeth
    13-15, F
    1 Response Mar 30
    When I was still in school my class had a trip to the beach for a few days. On the first day I told my friends that I am a nudist and would love to be naked on the beach. I trusted...
    youngNudist21 youngNudist21
    18-21, M
    2 Responses Mar 30
    I feel utterly crushed. I put my feelings back out there again, allowed you to convince me to give it a go to have you just go. I'm thrown away as easy as rubbish in your pocket...
    deleted deleted
    26-30
    2 Responses Mar 30
    World peace is not the main thing I should ask for - I would want to ask the world of humans to change for the greater in good where it is necessary - people changing is the root...
    Stephenrko Stephenrko
    36-40, M
    Mar 30
    My dad is a nice man, but he has problems. My parents became officially divorced in 2012 (my mother couldn't handle dad's angry outbursts), so I rarely see him. But when I visit...
    theabsurdistunicorn theabsurdistunicorn
    16-17, F
    2 Responses Mar 30
    My father in law, (please see my poem to him 'The Bitter Sea' if you have a moment), my mother in law, (again, though shared with own own mother on her death 'Task No More'). And...
    TValentine TValentine
    56-60, M
    Mar 30
More Stories