Post by karen on Sept 7, 2014 10:37:51 GMT -6
Hi all!
I was still lurking on the forum but not posting, happily enjoying my recovery from my second surgery in March 2014 for a myxopapillary ependymoma.
Just a review, first surgery in 2004 for a very large ependymoma L2-L4 with very painful symptoms, recovered fully at the age of 22.
Followup MRI in 2013 revealed regrowth at L5. I was asymptomatic and made the difficult decision to have surgery again in light of my desire to start a family and move on with my life (I am 32, elected to have surgery over watch and wait due to my history of myxopapillary ependymoma and wanting to get pregnant rather than MRIs every 3 months waiting for growth). Surgery was mostly uneventful, healed and felt back to my normal self and back to full time work (as an occupational therapist) after 8 weeks.
3 month post-op MRI looked great, surgeon tells me I should get pregnant whenever I feel "emotionally ready" to move on and stop MRIs for a bit.
I had my 6 month follow up MRI last week. I read the report myself and it all looked good. I went to the appt with my neuro oncologist the next day (because my surgeon just left the hospital) fully expecting an uneventful and happy visit. She told me that upon review of my MRIs with the radiologist they saw something suspicious at the very end of the thecal sac. They were going to amend the radiology report I had already read. . . it is about 5mm, enhances with contrast, in the cauda equina (extra suspicious because this is where these tumors like to grow). The kicker: upon review of the FOUR MRIs I had prior to this one, the tumor was there all along and it was missed. Perhaps I could have just had it removed during my surgery last March. It hasn't changed in size since the first MRI 10 months ago.
Now the tumor board is again recommending surgery, largely in light of my desire to get pregnant and start a family. I am in shock that I find myself in the exact same position as last fall---weighing the pros and cons of having surgery for an asymptomatic growth that is suspicious for (but no one can say for sure) regrowth of ependymoma.
I am angry, sad, extraordinarily frustrated, feeling like I want someone to "blame". My surgeon that I know and trust has since moved across the country to a different hospital. The prospect of not only having surgery again but starting over with finding a surgeon is overwhelming!
I'm lucky to have this board and a very supportive network of friends and family. . .
I was still lurking on the forum but not posting, happily enjoying my recovery from my second surgery in March 2014 for a myxopapillary ependymoma.
Just a review, first surgery in 2004 for a very large ependymoma L2-L4 with very painful symptoms, recovered fully at the age of 22.
Followup MRI in 2013 revealed regrowth at L5. I was asymptomatic and made the difficult decision to have surgery again in light of my desire to start a family and move on with my life (I am 32, elected to have surgery over watch and wait due to my history of myxopapillary ependymoma and wanting to get pregnant rather than MRIs every 3 months waiting for growth). Surgery was mostly uneventful, healed and felt back to my normal self and back to full time work (as an occupational therapist) after 8 weeks.
3 month post-op MRI looked great, surgeon tells me I should get pregnant whenever I feel "emotionally ready" to move on and stop MRIs for a bit.
I had my 6 month follow up MRI last week. I read the report myself and it all looked good. I went to the appt with my neuro oncologist the next day (because my surgeon just left the hospital) fully expecting an uneventful and happy visit. She told me that upon review of my MRIs with the radiologist they saw something suspicious at the very end of the thecal sac. They were going to amend the radiology report I had already read. . . it is about 5mm, enhances with contrast, in the cauda equina (extra suspicious because this is where these tumors like to grow). The kicker: upon review of the FOUR MRIs I had prior to this one, the tumor was there all along and it was missed. Perhaps I could have just had it removed during my surgery last March. It hasn't changed in size since the first MRI 10 months ago.
Now the tumor board is again recommending surgery, largely in light of my desire to get pregnant and start a family. I am in shock that I find myself in the exact same position as last fall---weighing the pros and cons of having surgery for an asymptomatic growth that is suspicious for (but no one can say for sure) regrowth of ependymoma.
I am angry, sad, extraordinarily frustrated, feeling like I want someone to "blame". My surgeon that I know and trust has since moved across the country to a different hospital. The prospect of not only having surgery again but starting over with finding a surgeon is overwhelming!
I'm lucky to have this board and a very supportive network of friends and family. . .
