6 replies to this topic

[ependymoma23]

I was wondering if anyone had any of these symptoms and what helps. heres my story in a nutshell

i was diagnosed witha ependymoma tumor in my c2-c6 and a few later it was removed. I woke up not being able to move any limbs after 7 months of rehab i was able to walk and my arms slacked alot. later to find out i was a tetra with central cord

its been a year since the surgery and i have had c2-t2 fused and disected in october last year and now i can walk and am independant but its taken ALOT of work to be able to do what i can

i am numb all over neck down, dont feel temperture except wind, i have vibrating sensation in my calves and feet when walking. My hands are the one thing i use all day long and they are hgyper senstive.. im on cymbalta, neurotin, and lyrica to help but the nerves act up soooo much. its either needles poking me pain or feels like there burning and stretching (sorry its hard to exlplain) i just dont know what to do. there senstive to everything
im also in therapy to be able to lift them more than 40 degrees

Im also a mom to a 2.5 year old son and it gets difficult when my hands hurt all the time

always staying positive but i feel like im the only one with that tumor so large
im very happy with my recovery and attitude just wondering about my hands

[lavenderthistle]

I too have central cord syndrome. I'm a walker, I'm as odd as the next person. I do have feeling, at times too much. I'm a Mom, wife...even worse housekeeper now than before! I have less energy, but I'm glad to be here annoying those I love.

I'm just over a year with this, but my hands burn and hurt a lot. I take neurontin for the nerve pain. I also use some naturals...I'm not sure what if anything keeps it lower. I have noticed stress and weather changes make it more noticeable....also lack of sleep.

welcome

[greybeard]

Hiya Ependymoma. Welcome to the forum. Most here have some degree of nerve pain so stick around.

[Duc Vo]

It's unfortunate that you have these problems at a young age. You sound wise and courageous, keeping yourself positive and happy with your recovery. You're a loving mother, too. You deserve to have a complete recovery and I hope your physicians would bring it to you. Meantime, please know that you're more fortunate than some other people.

I had my C-3; C-4; C-5 fused and a Baclofen pump implanted after a fall in December 2006. It effected my upper and lower extremities. I have had therapy continuously over 5 years. I can walk around the house with a cane and lots of pain. I can type with one finger of the right hand and another finger of the left.

[greybeard]

I can type with one finger of the right hand and another finger of the left.

That's as much as most able bodied people can do.

Welcome to the forum.

Edited by greybeard, 12 May 2012 - 11:00 PM.

[Tetracyclone]

Hi there E-Momma! I am also a Tetra and t he tingling in my hands, the cold of my legs. bothered me a lot. Sometime during the third year I stopped paying much attention to it. The sensations did not change but it became ordinary to me.

[Elizabeth Williamson]

Hi I have just joined the apprelyzed site. I had an ependymoma tumour removed in early July this year. The tumour site was C7-T3, with associated cysts above this area from C3-C7. I am advised that the cysts may slowly drain, which may reduce some symptoms, but no escaping the C3 injury.
Prior I had really terrible pain in my left shoulder, arm and especially my left hand; weakness in my right leg; digestion problems; urinary problems. My family laughed about my clumsiness.

After surgery i still have all the above, except my digestion has improved. I am numb from arm pits down, although I have some areas of sensation, especially on right side. I am taking high doses of gabapentan to manage neuropathic pain in left shoulder and hand, and recently started meds for bladder problems. I have such fatigue. I need to be very cautious with any upper body activity; can't tolerate weights, bending down. I need to sleep for an hour or two each day to manage the pain. Slight touch, cold metal and rough surfaces are awful stimulus for pain.

Like you I have terrible leg sensations - tingling, vibrating constantly. This interrupts my sleep quality significantly.

Family and friends have been great in the early days, but no one really 'gets' being an incomplete quadriplegic.
I am walking, rebuilding core muscles through rehabilitation therapy. Luckily in Australia we have free medical services, so rehab is available indefinitely. I have also been able to receive most of my equipment for home living and independence free as long as I need it or for free loan through our hospital system.

I am walking, with aids such as crutches, canes, walkers and use my wheel chair lots, as its the only chair I can sit comfortably in. I would love to find a recliner or lounge chair I can relax in - but have had no luck in finding anything that provides enough lower back support.

Recovery is/has been a full time occupation - such hard work and daily focus to regain health and mobility, and find the right strategies to manage pain.

Good luck and keep persevering!