myxopapillary Ependymoma

lav593 said:

Same situation, same time
Hi Stephanie,

My name is Lisa and I am 19 years old. Ironically, last year around this time I was also diagnosed with a spinal myxopapillary ependymoma. I had to withdraw from school to have surgery 2 days after my 19th birthday but like "okienmn", I also didn't think too much of it, more of an obstacle rather than a life changing experience. I had moderate lower back pain for about 3 years in high school, assuming it was all from sports I played and I learned to deal with it to the point where it became impossible to sleep at night because the pain was so severe. Finally I got an MRI and had surgery less than 2 months later. Since it all happened so fast for me, I never really had a chance to research or look into options. Had I done that, I might have chosen to have radiation therapy along with the surgery to reduce the risk of it potentially coming back. The recovery process was much faster than anticipated but now that I have been back at school for about 6 months now, I am started to develop worsening pain and find difficulty sleeping again. I am due for an MRI and I am quite nervous for what the results might show. However, this is mainly because of what I have been reading on the internet about recurrence rates and I was not expecting them to be so high. I am hopeful though as you should be too. We are both young, so our ability to recover is much faster than that of someone older. Nevertheless, if I have learned anything in the past year it is not to believe what you read on the internet. If you have questions, call your doctor or surgeon. They will give you direct personal answers where the internet is typically composed of unreliable sources. I'm sure by now you are as well informed as I am, but if you ever check this site at all still let me know how you're doing. I am curious as to whether others commonly experience pain again after long periods of no pain after surgery.

Lisa

lav593 said:

Same situation, same time
Hi Stephanie,

My name is Lisa and I am 19 years old. Ironically, last year around this time I was also diagnosed with a spinal myxopapillary ependymoma. I had to withdraw from school to have surgery 2 days after my 19th birthday but like "okienmn", I also didn't think too much of it, more of an obstacle rather than a life changing experience. I had moderate lower back pain for about 3 years in high school, assuming it was all from sports I played and I learned to deal with it to the point where it became impossible to sleep at night because the pain was so severe. Finally I got an MRI and had surgery less than 2 months later. Since it all happened so fast for me, I never really had a chance to research or look into options. Had I done that, I might have chosen to have radiation therapy along with the surgery to reduce the risk of it potentially coming back. The recovery process was much faster than anticipated but now that I have been back at school for about 6 months now, I am started to develop worsening pain and find difficulty sleeping again. I am due for an MRI and I am quite nervous for what the results might show. However, this is mainly because of what I have been reading on the internet about recurrence rates and I was not expecting them to be so high. I am hopeful though as you should be too. We are both young, so our ability to recover is much faster than that of someone older. Nevertheless, if I have learned anything in the past year it is not to believe what you read on the internet. If you have questions, call your doctor or surgeon. They will give you direct personal answers where the internet is typically composed of unreliable sources. I'm sure by now you are as well informed as I am, but if you ever check this site at all still let me know how you're doing. I am curious as to whether others commonly experience pain again after long periods of no pain after surgery.

Lisa

latanya lynn said:

Im the 1st girl to have Mixopapillary Ependymoma
I was 12 when i found out I had it 3 weeks later I was at Childrens Hospital in New Orleans Louisiana having surgrey. Im 22 years old now an Im still in pain. I have have a bad spine now I have to have a fusion done to straighten it out.. When I first caught this it was only 2 other people that had it an Im so amazed on how many people have it now!! God bless you all for what your going through!

kalaoamom said:

my son
Lisa,
My 13 yrs old son has been dealing with this from the age of 8 when he was diagnosed with his first myxopapillary ependymoma at L1-L2. Last year they found another. The doctors called it "a downward metastatic spread of a benign tumor" This time at L5-S1. The first tumor was very "sausage" like and was removed whole. The second tumor surrounded major sacral nerves so they had to leave in a 6mm mass. We have been told radiation at this time with him reaching puberty, is not advisable. He just had his MRI and it is showing a new area of enhancement...Just in the last few weeks he is experiencing pain in his back again when he becomes very active, ie runs 2 miles, surfs etc. The doctors we have dealt with have never referred to this as CANCER. What have you been told? Are you doctors experienced with this type of rare tumor? My sons neuro surgeon suggested finding somewhere that had experience and research with these tumors as they are quite rare. Currently we have Dr Kelly at the John Wayne Cancer Center reviewing his case every six months since last surgery. Now that there is some question of reoccurrence his next MRI will only be 8 weeks from his last.

I hope your MRI shows no new activity and your pain is from the surgery scaring. My son did have no pain for 3 years before it came back. The best thing you can do is stay positive and just take each day as it comes. (living this as I have StageIV cancer)

I wish you all the best

Diane