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pravin1 (@pravin1)

Treatment of recurrent ependymoma through immunotherapy

Brain Tumor | Last Active: Dec 8, 2019 | Replies (6)

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I'd like to add my welcome to Mayo Clinic Connect, @rikrider. That is quite a story of going from news that you had 6 weeks to live to having life-saving surgery. My father-in-law has another type of tumor, neuroendocrine, but 2 years ago he had a similar situation where he was basically told he had about a year left to live, as tumors had filled a lobe of his liver and treatments were not working well on his disease. Finally, somehow he qualified for surgery and a surgeon at Mayo Clinic who takes on very complex cases basically saved his life.

I'd like to introduce you to some others who have mentioned ependymoma tumor who may be interested in hearing more about your story or asking you some questions, like @beckyziegler @jcorcoran @spacemoth @annrmarie.

You mentioned you are currently tetraplegic, rikrider. Do you have sensory and motor loss, or just one of those?

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Replies to "I'd like to add my welcome to Mayo Clinic Connect, @rikrider. That is quite a story..."

Initially, I was paralyzed and in a motorized wheelchair. I was going through intense physical therapy for the 52 days I was there.
I stayed in physical therapy for about two years but continued on my own. I moved to a regular wheelchair as I gained movement in my arms and legs. My primary issue has been pain, but had to push on. I then graduated to a walker, then a cane. I stayed determined and kept pushing. Unfortunately, it was more than my spouse could bear and I divorced after 30 years of marriage. It was then that I adjusted my thinking, and it was the most important thing. I increased my own therapy and got serious about my health. I discovered ketogenic eating and it changed my life. I took off 40 pounds and walked and used stretch bands to develop muscle tone. I married a wonderful lady and stay on course.

Now, as far as motor skills-I have numbness in my limbs and my right hand always has burning sensations but they move and work. it was 10 years on October 29, (my reborn date), and I continue to work and learn. So far, no recurrence of the tumor. I cannot say that I have gotten used to the pain but I manage it through meditation and care of my body. Motor skills? I may stumble some but I blame it on my lack of feeling in my legs and feet and concentration overcomes.

I hope this helps a bit.