Complications after surgery

[Cia722]

Hi Everyone,

My father has an ependymoma tumor (not sure what location in his spine). He received a surgery to remove it November 2012. However, they were not able to remove the entire tumor because of all the nerves around it (it was basically wrapped up in nerves). The nerve damage would have caused him to be paralyzed and have other complications.

After the surgery he started having problems walking and having sensation/feeling in his right leg/foot.  The scar tissue created by the surgery blocked fluid from moving through that part of his spine.  So now there's pressure in that area and on those surrounding nerves.

He was able to work and drive until 2015 when his leg became extremely bad.  Up to that point he was basically dragging his foot and pulling himself up stairs. 

The man is MACHINE!

Slowly his other leg/foot started to go fully numb as well.  He is currently suffering from tons and tons of pain, he has been in a wheel chair for the past year and currently can only sit up for not longer than 30min.  The rest of the day he lies in bed and reads.

He can't move his legs but the nerve damaged is causing him pain.  He says it is a burning pain and just recently he told me it feels like a truck is driving over his foot.

NO medications have helped with his pain.

My question to all of you is, how did your surgery go?  Did you have any complications such as these or others?  What are you doing to deal with the pain?  What is going to happen to my Father?

My parents don't talk about it much with my sister or me.  But I would like to know what else is there to do.

Thank you all,

Cia722

[dave37]

This is my experience. I am looking for answers too.
I had pain in my left upper back and neck with shooting pains around to the left side of chest for a number of years. An MRI of thoracic spine WOW done in Oct 2016 revealed a tumor C7 – T3. Resection of the tumor was done 22 Nov 2016. Evaluation of the tumor revealed it was an Intramedullary Ependymoma, WHO Grade II tumor. Most of the tumor was too interconnected with the nerves to remove. I had 30 radiation treatments Jan – Mar 2017. The day after the surgery, I had muscle stiffness/tightness from the left armpit down to the bottom of my left foot. For the first 4-6 weeks, this started to gradually get better. However, the more I walked and every time I had a bowel movement (regardless of consistency) the left thigh and buttock muscles would tighter up more. One morning 4-6 weeks post-surgery (about 2 weeks before starting the radiation therapy) when I went to get out of bed my left side from the armpit down spammed. It released after a second but remained tighter than before the spasm. Since then my symptoms on the left side from the armpit down have gotten increasingly worse. The more I walk the tighter my muscles become and my foot swells. I tried physical therapy twice but the stretching and movement made my condition worse. The increased tightness started in my foot and slowly moved up my side. As the tightness got worse my skin became extra sensitive to touch and the tingling increased. Over time as it continued to get worse my upper abdomen muscles on the right side as well as the left side started to tense up and become very tight, especially after eating. The longer I lay in bed at night the quicker my left side is to spasm. Since the first spasm, before getting up, I start slowly moving the toes on my right foot back and forth, then the toes on my left foot. Next I bend my right knee several times then my left. After that, I move my right leg then left leg over the side of the bed and push myself into a sitting position with my right hand/arm. If I go slow enough, I can get up without my left side having a spasm. As my condition worsened, if I pulled the sheet or covers across my left leg, it would spasm so I had to take my right leg and lift the sheet up and off my left leg. Most of the time my left foot under the inside of the ankle and in the back is swollen, at least some of my foot muscles and my lower and upper leg muscles are tight making it difficult to walk properly. I am on 30 mg of baclofen but so far that hasn’t helped. The doctor says I just have to be patient but my condition is getting that bad that it is very difficult for me to work. Has anyone experienced these symptoms?

[Steve Petro]

Go to NY and see Dr Mark Bilsky at Sloan Kettering he saved my life. 2.5 years post op of an epidynoma removal C2-C5 surgery was 14 hrs and although I am experiencing numbness and clumsy hand syndrome I am walking and talking and still improving

[Cia722]

Apr 18, 2017 13:02:27 GMT -6 Steve Petro said:

Go to NY and see Dr Mark Bilsky at Sloan Kettering he saved my life. 2.5 years post op of an epidynoma removal C2-C5 surgery was 14 hrs and although I am experiencing numbness and clumsy hand syndrome I am walking and talking and still improving

Did you have any scar tissue after surgery?  That is my father's problem. The scar tissue caused by the surgery has been preventing spinal fluid (or some kind of fluid) from moving freely and it is putting pressure on nerves. This is causing him to loose feeling in his legs and now his arms a little bit.

[Help is out there]

Dr. Paul C. McCormick is the foremost expert when it comes to Spinal cord tumors. He works out of the The Spine Center at Columbia Presbyterian. He also performs surgeries at The Valley Hospital in Ridgewood, NJ. The man is a living miracle.