Ependymoma

[vinny]

Hi all, I am a new member to this group and I live in Manchester England. I have been told that I have a ependymoma inside my spinal cord at L1. My consultant is sending me for a brain scan as he feels there may be a second tumor there.
I only started with this in Nov 08 thinking it was sciatica but the MRI showed the tumor, which they first thought was a AVM. My consultant has basically told me there is nothing they can do until my symptoms get a lot worse as an operation would cause damage to my spinal cord and would have serious effects on my general condition. He also ruled out radiation and any other treatment, so I have been told to wait.
I have asked to go for a second opinion at another hospital which is supposed to be more specialised with brain and spine tumors and I am just awaiting an appointment.

Wish everyone good luck whatever you decide to do and I will hopefully keep you all informed later and look forward to chatting with you.

[darren]

hey vinny, welcome to the group, I see its been 2.5 months since you posted your condition. hope everything is going well. I had a lumbar tumor removed when I was 14. that was 23 yrs ago. it took many doctors and over one year to find a doctor who knew what was wrong. Dr Allen, a neurosurgeon in Nashville TN resected mine. the tumor was the size of a hot dog when it was removed. keep us posted on how you're doing.

[suzzie25]

HI VINNY,
I HAD AN EMPENDYMOMIA IN THE C-3 SECTION NECK AND HAD SURGERY ABOUT 9 YEARS AGO ..I DID LOST MOST OF THE SENSATION IN MY LEGS BUT THEY DIDNT THINK I WOULD WALK..SO THAT WAS A MIRACLE ...SO I HOPE YOU FIND THE RIGHT DOCTOR...AND GOOD LUCK SOME THINGS WE HAVE NO CONTROL OVER BUT HAND IN THERE ITS NOT EASILY NOT KNOWING WHATS GOING TO HAPPEN....EMAIL ME ANY TIME SUZZIE

[vinny murphy]

Hi Suzie, thanks for the reply.

I have had a couple of MRI scans now and the assumption is that it is an ependymoma, but without surgery they cannot be 100%. Dont come on the site very often so if I take a while inbetween posts its not because I am being rude by not replying, its more likely I just havnt logged on.
My main worry after reading other posts is that my neurosurgeon hasnt come across one of these before, particularly one inside the spinal cord.
At present I am doing ok but dread the day when they decide that I need surgery, which hopefully is still a while off yet.

[scoutsox]

you DEFINATELY don't want to be a neurosurgeon's first SCT operation. Make sure the neuro you pick uses a team of specialists to moniter your spinal cord activity during the operation. Lastly, your symptoms don't necessarily have to extreme for it to be "time" for the operation. Good luck, keep us posted.

[jenn]

I had a spinal cord tumor removed from C1 to T4 in 95'and They told me the more function/sensation you go in surgery with the more you'll come out with so I would strongly recommend not waiting. I went to an amazing Dr in NY, Dr Epstein, but he passed away a few years ago. I have been having new tethering problems so I've been talking to Dr's that my original surgeon trained and I trust them because they have the experience.

[LoopyL]

Hi Vinny,

I had an ependymoma removed from within my spinal canal in November last year in Southampton, Uk. by Mr. Ali Nader-Sepahi. I cannot fault him, he was a lovely man and I was in theatre for 10 hours. My tumor was 12cms long and i have resumed my normal life. Being only 21 he had great concern that I was able to get back to normal after the operation.

It is definately worth getting a second opinion as said previously, i was operated on within 2 weeks of finding out about the tumor so cant imagine the worry that you are facing.

[rustylynn]

Vinny,

I hope this finds you healthy! Suzzie is right, look around and research. You do want a NS that has done this before. I have read to many horrible stories, they made me cry! Your right they can not be certain it is an ependymoma until they go in and take it out. Mine was at the T 10-11. I did not have any defs. except the top of my left big toe had no feeling and that was it. My NS took my case to the tumor board. After a very long meeting they all decided it was time. Its the chance you take and in his words.... Anything I lose before surgery (waist down) I could never get it back.

Please keep us posted!
Good luck,
Rusty

[wendy]

i also has an ependymoma removed at Southampton by Dr Nader-sepahi. he is amazing and very skilled at his work. my tumor was from c2 to t4 and i was in surgery within 24 hours of its discovery, 13 hours of surgery. by the time i had a mri scan i was already unable to walk, numb from the neck down and had severe weakness in my left arm. i recommend you have a second opinion as i had my surgery in august 2011 and now in April 2012 i am still recovering and just starting to walk again.

[kate]

I am inquiring for my wife Kate , she is in the QE2 Halifax NS Canada, she just had a large Ependymoma removed from c3 to c6 on april 17th 2012 . a long 12 hour operation, and they never got it all due to her vitals dropped rapidly, she then had her 2nd operation to remove the rest on april 24th 2012, her DR. is Dr. Dan McNeely trained by Dr. John House best neo sergent in the world, he also found 2 other small tumors that even the MRI didn't find, she is on a long road to recovery , lost her feeling and control fully in her right leg and most in her right arm, no control over her blatter or bowls, her problem began last August with sore right shoulder, then tingling in her right hand to extreme pain in her right shoulder to no feeling in her right hand them once in a while her right leg for no reason would give out and she would fall. her family doctor put her on nerve blockers and pain meds, assumed she had carpul tunnel and a router cup worn in her right arm and hand then her doctor talked to a specialist Dr. McNeely @ the QE2 Halifax Nova Scotia and booked her for an MRI, then a 2nd MRI with die injected in the blood stream, now if she would have only had a regular MRI nothing would have showed up. But with the die the tumor showed up perfectly . So may I suggest that if you have some of these symptoms and are going for a MRI suggest to your DR. and specialist to use the die