No Surgery?

[aem244]

Hello!  I am 26 years old and was diagnosed with a small intramedullary ependymoma (T11-T12) 8 years ago.  I have back pain and a bit of numbness/tingling/spasms in my legs.  However, other than that, I cannot complain.  When I was diagnosed, I was referred to a neurosurgeon who suggested that I don't get it removed until absolutely necessary.  However, when reading scientific studies, they show that the best prognosis occurs when removing it as early as possible.  I have gotten several MRIs since my original diagnosis and the tumor seems to be very slow growing and not much progression in symptoms.  I feel very lucky that it is so small with few small symptoms, but I worry that my doctor is not taking this seriously.  He feels like I have probably had this my whole life and that it won't grow much more.  I sought a second opinion who more or less agreed with the first doctor that I should maybe wait on surgery.

Has anyone else been diagnosed with this and NOT had surgery/radiation?  I am nervous that my symptoms will start progressing rapidly at some point and will then have a poorer prognosis.  However, I also don't want surgery unless it is truly necessary.

Thanks!

[samuridude]

Dec 3, 2013 23:21:24 GMT -6 aem244 said:

Hello!  I am 26 years old and was diagnosed with a small intramedullary ependymoma (T11-T12) 8 years ago.  I have back pain and a bit of numbness/tingling/spasms in my legs.  

If you are experiencing numbness /tingling/spasms in your legs, then damage is being done. Your age is also a plus now, 20 more years maybe not.
If the tumor is operable and in good health, I wouldn't hesitate if I was in your position.  

How did they find the tumor at your age ? 

[aem244]

Hi Samuridude! Thanks for your response! I hope you are doing well. I fear that if I get surgery I will have permanent and severe symptoms. However, my doctor had told me that it would be an outpatient surgery and I would probably only have numbness/tingling for a few days. This does not seem realistic to me, as my ependymoma is within my spinal cord and they would have to cut the cord to get it out. Although I am not a doctor, I am currently in graduate school completing my PhD in Neuroscience and Rehabilitation.



I happened to discover it by chance. As a senior in high school I had low back pain that landed me in the emergency room. They decided to get an MRI. I think my back pain is more musculoskeletal instead of related to the ependymoma, but I am not entirely sure. It has been about 5 years since my last MRI and I am starting to get curious again about its growth.

[samuridude]

I misread the part about your tumor being interior, that makes your decision that more complicated.
I didn’t have a choice as my tumor was a found because I couldn't walk. My neurologist gave me 48 hours
before I was completely paralyzed and the chances of recovery would be against me if I didn't proceed. They told
me that I would have to catheter myself and diaper. Everything went ok and I've proved them all wrong.
I hope everything works out for you, good luck.

[von]

Mine is T10 to L2, I was walking with a cane before surgery. I unfortunately have a large cyst that I think may be causing a lot of my post-surgery (nonoperable tumor) grief. I did have radiation though, so I'm not the one to give advice. Wishing you well though.