Last year, my husband was diagnosed with an ependymoma. Literally, they had to assemble a team of specialists to review the case and even agree on what type of tumor it was. Majority ruled ependymoma. This brain tumor chose to grow in his lower spine, below the spinal cord. He received surgery for treatment. No chemo or radiation ordered. We are coming up on his first check up. He has read about a 5 year survival rate, but the doctor never mentioned these statistics to us. He is convinced he has "4 good years to go". He is a young man. Can anyone offer an opinion on this circumstance? Survival rates if it grows in your spine instead of the brain? Most of our research is regarding the brain as the tumor site. We see our (his) doctor in 2 weeks. I'm getting a little nervous. I want to be prepared with good questions. Many thanks and God bless!!
I was diagnosed with an ependymoma in June 2008. It was located inside my spinal cord at T-8 thru T-11. On July 12, 2008 they wnet in a removed as much of the tumor as they could without doing permanent damage. Mine was found to be low grade cancer and I went thru 5 weeks of radiation treatments. One week after the surgery to remove the tumor (while still in the hospital) my colon busted and I had to have emergency surgery to repair that. One year later I am doing fine I guess for what I went thru. I rely on walker to get around. My balance is off and I do not know where my feet are. The biggest problem I have now if numbenss, tightness and tingling in my legs. I went to the doctor today and she put me on muscle relaxers to relieve this. Sure hope it helps. My doctor never gave me a survival rate. He will montor my tumor to make sure it does not return. I agree in trying read about ependymoma everthing mostly refers to the brain.
How are you?
The prognosis of spinal ependymomas depends on the surgical extent, tumor location, histological subtype and preoperative functional status.
The extent of resection also determines the prognosis. Extensive surgical resection increases the time to recurrence.
Usually spinal ependymomas have a better prognosis than the cerebral ones. Radiotherapy is usually recommended in patients who did not have gross total resection.
Do let me know if you need more information. Keep us posted!
Thanks for your comment. They were unable to do a gross total resection of my ependymoma in July 2007. It was low grade cancer, so in hopes of it not growing or returning I had 5 weeks radiation theraphy. Well I guess it didn't work, I just found out last week that my tumor wnet from 5MM on my April MRI to 10MM on my August MRI. My doctor is sending me to a specialist in Phoenix, AZ at the Barrow Institute to see what the next course of action should be. I just hope I will at least be able to walk with a walker. My legs and feet have gotten worse since late December 2007. My original post says I was diagnosed in June 2008 it all happened in June/July 2007, so I just past my one year mark.
Thank you both for taking time to address my post.
My husband has been cleared from any further follow up at present. His peace of mind is slowly returning and we are vigilant with having anything bothersome checked immediately. He does have some remaining muscle weakness and numbness on his left side, but is able to move around without assistance. His medical facility was the University of Alabama in Birmingham. His doctor was one of the finest physicians I have ever met... and I'm a nurse so I'm quite picky. :) DMC, prayers are with you during your new treatment direction. Feel free to contact me if you would like a patient's perspective on UAB. When our doctor removed the tumor, he said it was like picking chewing gum out of a horses tail. God bless!!
I am a 26 yr old who was diagnosed with a spinal ependymoma when i was 17. I had it removed from surgery and at the time they didn't feel i needed further treatment. well... 9 years later while preganant for the first time i started having those severe pains again and was mis-diagnosed with siatica. Make a long story short? 5 days after delivering my daughter and having been brought to the ER the night before in pain, I was in surgery again to remove the same dang tumor (biopsy showed same grade, type and location). I am now starting radiation just to make sure i dont have a reoccurance again. As far as "survival rates" go, each type of tumor is different as far as make-up and location so it varies. My oncologist stated that it is 5 years before you are considered "cancer-free." Both my Oncologist and Radiologist said that with the surgery to completely remove the tumor, along with the radiation, they had no reason to believe it would return this time, considering how long I went without a reoccurance. The first year is the hardest since if it was an aggressive tumor it is most likely to return within that first year. I hope some of my experience has helped.
brother may have this. tumor located base of spine, T3, T4, I think. He is currently running his Biopsy samples from City of Hope to USC here in SoCal for another opinion. Been to 3 docs and they all have differing opinions. He is in excellent health otherwise, 48 yrs old.
Mine started in September 2014 I started having headaches everyday some days were worse than others went to the dr they started treating me for migraines it wasn't working had an MRI it showed something by my spinal cord of course in or small hospital we don't have a nerosurgen so we sent the MRI off to a different dr went and saw him he said he didn't know what it was and thought I was having cluster headaches told me to go see a different dr finally February 4 th I found a nerogist three minutes in his office he said it was a tumor and it was causing my headaches but I never lost my motor skills or loss of any vision so he didn't want to do surgery gave me topamax it helped a little went back in a month he still didn't want to do surgery so by now I used to work a 12 hr day at this time I was lucky to make it 8 hrs I couldn't bend over for any amount of time I couldn't do any real fiscal work it made my head pound I had lost 15 lbs of almost musel so he wanted to take me off topamax three days trying to get off I lost my motor skills and things were getting blurry called him he said get back on the pills that afternoon he called me back and told me to go see a neurosurgeon the next week we did and he looked at the previous 4 MRI and said we are doing surgery on April 22nd I went in the tumor was supposed to be 9mmX9mmX11mm it was supposed to be a two hr surgery but the tumor was twice the size that the MRI showed 4 hours later I was out I was in icu for 30 hours and in the hospital for four days it's may 11 th and it still hurts a little but getting better I still have some head pain but I think it is from surgery the dr called and said it is called a sub ependymoma its binine but it can grow back we are crossing our fingers that it doesn't I don't want to have to go threw this again I have had my shoulder worked on and this is nothing like that surgery I hope this will help someone out there
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