Ependymoma T8-L1

[rteacup]

Hi. I'm new to this site. I had surgery over 7 years ago by Dr. Barth Green in Miami Florida. I had a very large tumor, and most was removed but a piece was left inside of me so as to prevent more damage from occurring after surgery. I now walk with a cane and have damage in my right leg, pain, burning, toes crunching, leg stiffening, foot turning. There is also some damage on my left side, but not as bad. Just had another MRI, and the tumor is growing. My options now are to go back in and have surgery or receive radiation. I'm afraid to have surgery again because more damage will occur. If I have radiation and it is not successful, it will make the surgery more difficult to perform. I want to know if anybody has had radiation for something like this and if there is any success with it. I'm going back to Florida to see my surgeon again, but was also referred to Dr. George Jallo and will be heading to Baltimore for a consultation as well.
Thank you.

[Linda51]

Hi rteacup, I am sorry your tumor is growing again. My tumor not in the same location as yours but did want to say even though it is scary thinking of another surgery that there is no 2 surgeries just alike. I had 2 within 2 months time and had quite a bit of damage done the first time, with my 2nd surgery I was no worse and did much better and even had more done to me the 2nd time than the first time.

In the past 7 years the technology has gotten better as well. Dr Green is a wonderful NS as you already know and so is Dr Jallo.

I have also had 33 radiation treatments and had good results from it as well. By that in 17 years my tumor hasn't reoccured. I would say check with the NS first before going with radiation. They say radiation doesn't do any good for ependymoma tumors but that what I had as well and I say my experience was different. Also, radiation has change in 17 years as well.

Hang in there and keep your chin up!!!!

~Linda

[rteacup]

Hi Linda,

Thank you for answering and for all of your insight!
I am trying to hang in there. I will keep you posted as I go to see Dr. Green next month, and then off to see Dr. Jallo as well.
Hope you doing well!!
-Renee