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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. 45 People

    "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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    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 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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    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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    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 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 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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    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 1 Response Feb 28

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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 2 Responses Jan 7

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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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    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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    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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    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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    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 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 1 Response Jun 1, 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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    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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    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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    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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    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 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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    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 5 Responses Sep 12, 2011

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    Related Experiences

    They say some girls you take home to mom, some girls you just take home. I'm 45 and have never gotten a marriage proposal. I finally put a "Do not disturb" sign on my pu**y and...
    sacredfire222 sacredfire222 41-45 1 Response 1 hr ago

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    This may sound a wee bit silly to a lot of fokes. I have a best friend, he is 11 years old, he is very comforting to me. he does not question me, he likes to sleep on my clothes...
    flyingangel7 flyingangel7 46-50, F 4 hrs ago

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    My family was more involved with making people believe we lived some perfect or amazing life but reality...it was all a show. Now, in comparison to others experiences i had it...
    bandelt7 bandelt7 26-30, F 2 Responses 3 hrs ago

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    what is the best medicine for pmc ? is it diamox. do we have have to take diamox for the rest of our life?
    jkt2014 jkt2014 26-30, M 2 hrs ago

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    I have decided to just live a happy life being a good person. There are so many things that I have to be thankful for & I do feel blessed
    PyjamaCat PyjamaCat 36-40, F 2 Responses 1 hr ago

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    I had a strange dream that I got an email from a girl I had fallen out with a year or so ago. We haven't spoken since so I thought it was weird I had a dream she emailed me. So the...
    katwilliams87 katwilliams87 26-30, F 32 mins ago

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    I really felt alone with my anxiety, until I started to post on here. Somehow, I think writing my thoughts out, actually helped me. Sure I still have anxiety, but it's not as worst...
    HawaiianPunchz HawaiianPunchz 16-17, F 4 Responses 4 hrs ago

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    Problem. My girlfriends ex wants us dead. I noticed a guy with a camera standing in an ally across the street. I didn't think to much of it at first but when Sarah went out to get...
    whattodo32 whattodo32 18-21, M 1 Response 1 hr ago

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    Maybe he's given up? God, I hope so. Maybe He's been there the entire time and I just haven't noticed Him.
    WeskaDarkstar WeskaDarkstar 26-30, F 1 Response 53 mins ago

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    It's bad because I'm only 18. But I will wait and will definitely not let it happen. I have some serious baby fever though.
    Madii144 Madii144 18-21 6 Responses Mar 21

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    i am beginning to have them all the time and i dont know y im afraid im gonna have an accident in public soon :(
    anonymous2456 anonymous2456 18-21, M 2 Responses Mar 21

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    I have an eating disorder that I struggling with. It started in highschool my junior year and I was cheerleading. Something triggered it again about a year ago and I am traveling...
    Anarai Anarai 26-30, F 1 Response Mar 21

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    I had my surgery on Dec/5/2011 I lost 183lbs in the first 6 to 8 months. Then I started to maintain my weight. I had been the exact weight for the past year and a half. Now I have...
    tltb310 tltb310 41-45, F 2 Responses Mar 21

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    I want to have a lesbian girlfriend. I am Asian, caring, hospitable and most like what you have girls. shoot me a message and i will give you my personal email. no hurt breaker...
    BSIMTC BSIMTC 18-21, F Mar 21

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    AgeMeet.com is the #1 Age Gap Dating Site for younger women older men dating . It is Free to post & browse 550,000+ active members. We have been in the online dating business for...
    fionacc11 fionacc11 26-30, F Mar 21

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    AgeMeet.com is the #1 Age Gap Dating Site for younger women older men dating . It is Free to post & browse 550,000+ active members. We have been in the online dating business for...
    fionacc11 fionacc11 26-30, F Mar 21

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    AgeMeet.com is the #1 Age Gap Dating Site for younger women older men dating . It is Free to post & browse 550,000+ active members. We have been in the online dating business for...
    fionacc11 fionacc11 26-30, F Mar 21

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    My husband had an affair with another woman...I have fantasies about having sex with her myself. I'm curious as to why her...anyone else have those thoughts?
    justmeasme justmeasme 36-40, F 6 Responses Mar 21

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    Hi there. I've recently been having blackouts, at random times. I haven't noticed any specific pattern. The only other time this has happend is that I had blocked out a entire...
    Marnis Marnis 16-17, M 1 Response Mar 21

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    I have a couple fantasies... First one I want to help guide my husbands penis into another woman's p••sy and watch it go in and out and then eat his c•m out of her p••sy...
    justmeasme justmeasme 36-40, F 6 Responses Mar 21

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    Five years ago was the last time i remember feeling humane. It was the last time I felt needed or was worth anything to the world. Every step I have taken since then has sent me...
    gabby861 gabby861 26-30 Mar 21

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    I think I'm gonna have to kick out my 19 yr old. She was a great high schooler, straight A's, never even 5 mins late for curfew, no drugs or drinking. She tried college but quit...
    itskismet itskismet 41-45, F 3 Responses Mar 21

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    i just cannot keep going on and on about ANY issue. its a big bone of contention between my wife and me, and i invariably snap. have tried yoga, and it only lengthens the fuse...
    Lovetotouch Lovetotouch 41-45, M Mar 21

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    Just a little something about me So I have all these ideas and thoughts in my head that I can sit and think of elaborately for hours on end. Then I decide I should probably write...
    Minty25 Minty25 22-25, F 4 Responses Mar 21

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    for someone people the adopted fees through an agency is really high! but im not going to give up i want a chance to raise i baby i cant have kids cause i had cancer. i would do...
    sadaco35 sadaco35 31-35, F 1 Response Mar 21

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    I was just diagnosed with hsv 2 last month. I was absolutely devastated when I found out. My first outbreak was MURDER. I'm currently doing suppression therapy as well and I'm...
    ALovelyMess ALovelyMess 31-35 1 Response Mar 21

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    I have had three lovers who were confidential informants set me up to be arrested and prosecuted by law enforcement, in order to get out of their own felony charges.
    miles2gob4isleep miles2gob4isleep 56-60, F 3 Responses Mar 21

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    Hey, I have never been to this or know anything about it but the name keeps popping up. What's it all about? X
    HereForTheRideMan HereForTheRideMan 26-30, M 2 Responses Mar 21

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    I lift naked a lot. Sometimes ride the stationary cycle. Have not tried running naked yet.
    Widgeon287 Widgeon287 46-50, M 1 Response Mar 21

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    I have a naughty secret I need to tell someone!!! It's so bad don't message me if you're really judgmental! I need advice ;)
    purelife9 purelife9 26-30, F 3 Responses Mar 21

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