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Ependymoma

4dogs
Posts: 1
Joined: Jul 2012

At 35 yrs old ( 39 now ) I was diagnosed with an ependymoma brain tumor (benign), and several spinal tumors from l2 through s1. The spinal tumors were removed, although the surgery was long and complicated, because the tumors were wrapped around the nerve sheathes. My symptoms existed for appxtly 2 yrs prior to surgery. They were - numbeness in my legs, feet, and toes. severe pain in my hips, legs, feet, and toes. My right ankle was so bad it felt like it was broken. I had pain that comes and goes in my arms, but was mostly in my right arm. My balance was off, although not always. I was always exhausted, and always easily frustrated. Headaches would never go away , and I became an Advil, and Tylenol junkie.
After the surgery, the pain in my legs went away. But all the other symptom remained, although they were less intense. New symptoms began again within months. Things like tingling and twitching on the left side of my face . As well, all the symptoms mentioned above were starting on the left side of my body.
I am now 39 , 4yrs later, and the symptoms are all coming back just like they were before.
However I have this weird feeling all the time lately, that my right side feels like it's 50 lbs heavier than my left. As I type this the twitching and tingling on the right side of my face are bothering me.

My real concern is that I don't feel I am being taken seriously by any doctors. they don't understand what I am trying to tell them, and I get passed from one specialist to the next.

Is this normal? My symptoms come and go. Sometimes I wonder If I am crazy , because usually I am able to manage dealing with the symptoms, and think only a little of it. During some of my doctors appoinments I actually feel sort of ok, so they blow me off , and tell me to give it time, and get another MRI, even though I have a medical history now. Other days , I am so tired and sore, and frustrated, and feel like am struggling to tread water and stay afloat(not literally).
I do have another MRI coming on July 21st, but I am so discouraged by the whole process, because the MRI was not requested by a neurologist , but rather a Rheumotologist, because the new nueorlogist I saw couldn't determine what was wrong, so he sent me to rheumotologist... long story...
Should it take this long to figure this out ? Any suggestions ?

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