Hi, I'm not sure where I can go to get more information. I just need some direction please. My mother passed away when she was 27 years old from what was diagnosed as a fast growing (rare form of) paraganglioma.
From my understanding heres a quick description. She was diagnosed at 25 after having what the doctors thought was whiplash. It had started as an inner ear tumor, travelled down her spine despite chemo and surgerys. She eventually became paralyzed from the neck down. She decided it was time and quit all treatment and died shortly after.
My concern is not so much for myself. Although I can say I waited to have children until I was older than 27. I am almost 28 and expecting my first child and I fear that she will inherit this aweful thing from me.
Is there anyway I can get copies of my mothers medical history so I can learn more? Any ideas on how I would go about this? There seems to be more information on the internet than there was 10 years ago, but there is so much terminology used and not knowing exactly which form she had makes it incredibly difficult to determine if it's somthing passed genetically. I now wonder if they just said paraganglioma because thats the closest diagnosis they could get at the time since it was in the late eighties.
The opinions expressed in WebMD Communities are solely those of the User, who may or may not have medical or scientific training. These opinions do not represent the opinions of WebMD. Communities are not reviewed by a WebMD physician or any member of the WebMD editorial staff for accuracy, balance, objectivity, or any other reason except for compliance with our Terms and Conditions. Some of these opinions may contain information about treatments or uses of drug products that have not been approved by the U.S. Food and Drug Administration. WebMD does not endorse any specific product, service or treatment.
Do not consider Communities as medical advice. Never delay or disregard seeking professional medical advice from your doctor or other qualified healthcare provider because of something you have read on WebMD. You should always speak with your doctor before you start, stop, or change any prescribed part of your care plan or treatment. WebMD understands that reading individual, real-life experiences can be a helpful resource, but it is never a substitute for professional medical advice, diagnosis, or treatment from a qualified health care provider. If you think you may have a medical emergency, call your doctor or dial 911 immediately.