2 years post-surgery

[adrian74]

My mom had spinal cord ependymoma removed in 2013. Neurosurgeon showed me the procedure confirming total resection. Paths indicated tanycytic ependymoma (which is another rarest of ependymoma).

she is walking (dragged feet prior to surgery). Had severe UTIs, perhaps due to bladder retention. Now her bladder control is good but went bad with Amitriptyline (Elavil 10mg). After she stopped taking Elavil, her bladder function is normal but - she wakes up every 1.30 hrs during sleep. She has urgency but can control - not for too long though.
Currently she is not on many medications. She takes Ultracet or tyelenol as and when required. 

Numbness and some sort of siffness she cannot properly describe - Numbness is currently a bother problem for her. It varies though. Sometimes she complains it from waist down and sometimes she complains in feet.






One thing is bothering her currently is dysthesias. She complains that whiplash pain like electric shock and burning of back. I am not sure if this is existing in many.

Does any one feel these...she is worried sometimes that what if.....


appreciate any input.


thanks a lot for reading!



Hope you feel much better every day!

[cyrola]

The numbness is normal. The electric shock is not. That suggests something pressing on the spinal cord. Has she had a recent MRI?

[poobear]

I'm a new member to this site. I was 52 when diagnosed with an ependymoma (T12-L2) and when 53, had surgery to remove the tumor. I'm 13 months post-op and am experiencing the electric shock/burning pains in my back. Am very grateful for finding this site because no one has been able to provide guidance on whether this is normal or not. I was off work for 3 months following surgery and returned on a part-time basis for 2 weeks. I am still experiencing a lot of pain in my back and numbness/tingling/burning in my feet, especially my right foot, and legs. I have found it very difficult to sit or stand for any length of time and walking is a challenge (feel like I'm 90 - heck, I've seen 90 year olds in better shape). Even laying down for long is uncomfortable. And sleep is few and far between. This has posed challenges with trying to work and being able to focus between the pain, meds and lack of sleep.

What type of coping mechanisms have others used to deal with these symptoms? Are you still, or able to continue, working? With my job I can ill-afford making any major mistakes. This could cost the company and I really don't want to put them in a bad situation.

It is very helpful to hear what others have to say about their experiences. People I've spoken with who have not had the experience of spinal cord surgery just don't seem to understand the continued pain. They seem to think that since I had the resection and the tumor was removed I should be running by now. I just can't explain this to them.

[rk]

my mom had her surgery about 8 months for a cervical ependymoma. she has had similar issues of electric shock symptoms, burning, and spasms. mri's have been clear of tumor, so that is a relief. haven't found a good solution to these symptoms. we keep adjusting the medications, but haven't settled on an optimal solution.

[Guest]

Is there a chance that this could be related to a tethered cord? My neurosurgeon advised me to be aware of this possibility especially if it occurs with movement.

[dennis ahlzadeh]

has anyone explored stem cell treatment to repair or fix damaged nerves?

[Cia722]

My father has an ependymoma in his spine and also has the same feelings your mother is having. He had surgery back in November 2012. He also had a hard time walking before surgery and now cannot move his legs at all. His pain is throughout his legs: burning sensation, numbness.

His complications are due to scar tissue from the surgery and fluid build up in the area. The area around his spine use to be like this, "||" and now its like this, | |". So all of that is causing pressure on the nerves in the surrounding area and that's causing his pain.

He is numb from the waist down too.

[Cia722]

Poobear,

My Father went through the same symptoms you are going through.  Walking became a MAJOR challenge.  He was a contractor so he was basically on his feet all day.  Unfortunately, he had to stop working two years ago due to the amount of pain and how hard walking became. 

His tumor hasn't grown since the surgery and he has not done any chemotherapy or radiation for a while now. 

Mar 9, 2016 8:22:20 GMT -6 poobear said:

I'm a new member to this site. I was 52 when diagnosed with an ependymoma (T12-L2) and when 53, had surgery to remove the tumor. I'm 13 months post-op and am experiencing the electric shock/burning pains in my back. Am very grateful for finding this site because no one has been able to provide guidance on whether this is normal or not. I was off work for 3 months following surgery and returned on a part-time basis for 2 weeks. I am still experiencing a lot of pain in my back and numbness/tingling/burning in my feet, especially my right foot, and legs. I have found it very difficult to sit or stand for any length of time and walking is a challenge (feel like I'm 90 - heck, I've seen 90 year olds in better shape). Even laying down for long is uncomfortable. And sleep is few and far between. This has posed challenges with trying to work and being able to focus between the pain, meds and lack of sleep.

What type of coping mechanisms have others used to deal with these symptoms? Are you still, or able to continue, working? With my job I can ill-afford making any major mistakes. This could cost the company and I really don't want to put them in a bad situation.

It is very helpful to hear what others have to say about their experiences. People I've spoken with who have not had the experience of spinal cord surgery just don't seem to understand the continued pain. They seem to think that since I had the resection and the tumor was removed I should be running by now. I just can't explain this to them.