I Have Hemangiopericytoma

A Hemangiopericytoma anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Hemangiopericytoma. You're not alone. 17 People

    Still Suffering

    I WAS MISDIAGNOSED WITH MEDULLABLASTOMA WHEN THEY REMOVED MY BRAIN TUMOR, 3 YEARS AGO. I REMAINED VERY ILL AFTER COMPLETING 30 RADIATION TREATMENTS AND THE DIAGNOSIS WAS CHANGED TO HEMAGIOPERICYTOMA- 1 1/2 YEARS POST-OP. ICAN'T GET A STRAIGHT ANSWER FROM ANYONE ON WHAT MY FUTURE...
    jen42 jen42
    41-45
    Aug 8, 2009

    Life Is A Dream Till Confronted With Mortality.

    I only discovered the 5lb hemangiopericytoma, rooted in the psoas muscle which runs down along the spinal column, after it started pressing in on other organs and began causing me some discomfort. I was fortunate in that I was able to go straight to the Mayo Clinic. They were...
    clanritch clanritch
    61-65, M
    1 Response Jun 26, 2013

    So Young.....

    My story begins in December of 2007. I am 24 yrs of age and I a married and have  a 6 yr old girl and a 3 yr old girl.  I am sharing my story not only to see if there are others out there like me but also for future information for others. I had went to...
    Amanda83 Amanda83
    22-25
    Jul 30, 2008

    It Is Just a Lipoma!

    Hello,       I have just recently had hemangiopericytoma remove from deep in the muscle on my left shoulder.I was told for two years that it was just a lipoma not to worry if it isn't bothering you just let it be.Well in July of this year it got so sore...
    wvstewartfan14 wvstewartfan14
    41-45, F
    Sep 23, 2009

    My Husband Had Hemangiopericytoma For About 15 Years

    Starting in 1997 my husband had brain surgery that was not diagnosed as hemangiopericytoma.  Possibly at that time it was not.. In 2005 he had Gamma Knife surgery to hit 3 small tumors that returned.  His last MRI was 2006.  In 2008 he had a seizure that led Drs. to find 15...
    Barbamiller6 Barbamiller6
    70+
    May 16, 2012

    Pelvic Hemangiopericytoma

    A little over a year ago I developed severe bladder contractions.  After months of discomfort, doctors ordered ultrasounds, a CT scan, and a MRI.  The bladder showed no abnormality.  However, a mass was located "near the ovary".  I was told to...
    amcjos1029 amcjos1029
    26-30
    1 Response Nov 18, 2010

    It's Been More Than 20 Years Ago

    It was misdiagnosed for about a month, first as a flu bug that I could not kick and then as appendicitis after being admitted to a hospital.  It came with night sweats, chills and uncontrollable shaking at night.  The first surgeon believed he was removing my appendix...
    Californian Californian
    56-60, M
    1 Response Apr 14, 2010
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