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Post by schristi on Dec 23, 2011 23:57:46 GMT -6
September 1, 2010 I was operated on by my wonderful doctor @ucsf for an ependymoma (T6). The majority of the tumor was removed and the minute amount that had to be left was destroyed by radiation. I have had as you all know and understand a very long recovery process (I even slipped and fell breaking my femur which put me in a wheel chair for 3 months and delaying my therapy). The majority of my motor skills were left in tact, however, I have had numbness (and still do) in the saddle area, legs and feet. I have had several wonderful therapists starting at UCSF & Saint Mary's in California , Home Health (while recovering from femur break) and Lakeside Tulane in NOLA. Immediately after surgery I could not walk at all but now I walk with a cane and still continuing with PT. Numbness is still significant but the doctors say I have at least 2 full years to still be able to regain feeling. With Jesus I believe I have even longer to experience relief but I sometimes get discouraged and impatient. As of December 17th I am one year cancer free. The most difficult thing for me recently has been the loss of my independence (I cannot drive). I have had what I call my "angels" helping me but I can't help but feel like a burden to everyone. I have A LOT to be grateful for, but I have been recently very depressed over this. Have you all gone through depression?
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nelly
New Member
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Post by nelly on Jan 7, 2012 23:21:39 GMT -6
I think everybody does at some point. I was misdiagnosed for two year then told I had menopause before getting sick, going to the ER and being told I was pregnant and had a mass on my brain. I went to the Mayo Clinic had surgery for a cervical ependymoma and am now trying to get back to "normal". It's hard to be strong, not just for yourself but for family. I'm just good at hiding it. I pray a lot and thank God everyday, but I'm scared. For my husband, and children. It's not something I like to talk to my family or friends about because I too don't want to feel like a burden. I hope you know you're not alone,even though we feel like it. I try to be as independent as possible and I apologize profusely to everybody. I hate being the needy one. I hope this helps to let you know I understand.
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Post by ependymoma23 on Feb 17, 2012 21:51:46 GMT -6
I HAD a c2-c6 ependyamoma that was killing me and I woke up from a 15 hour operation and couldn't move ...eating drinking dressing, getting rolled every hour and my son all had to be done by others and I was mad upset and cried a lot feeling like I couldn't do anything by myself BUT I started being positive.and pushed forward knowing I can do it... I'm now walking and my arms are limited but u have to be positive
My story is at tumotsremoved.weebly.com u can do it be positive I would drive my wheelchairs around the rehab and get sad because I wanted the old me back.... I'm 23 with a 2.5 year old
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Post by ependymoma23 on Feb 17, 2012 21:52:29 GMT -6
tumorsremoved.weebly.com **
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Post by kathyb on Feb 28, 2012 23:58:31 GMT -6
Yes, I think it is common to feel depressed at some point in this whole process. I was on meds before my surg 1 yr ago, didn't have any of my anti-depressants changed, but now think I am going to have to. I feel like I am falling down the rabbit hole with no hope. The constant pain and the length of the recovery has been the back breaker, so to speak, for me.
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Post by alison8 on Jan 31, 2013 12:30:05 GMT -6
Hey Guys i think that depression is a state of low emotions and aversion to activity that can have a negative effect on a individuals thoughts, actions, emotions,and physical well-being.Depressed people may feel sad, nervous, vacant, despairing, concerned, despairing,harm, or unsettled.Thanks!!
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Post by von on Feb 12, 2013 17:50:38 GMT -6
Yeah it's normal. Being honest, it's a death and rebirth process. At some point you realize things will not be the way it was before. You have to learn a new way of thinking and doing, that is difficult.
A positive attitude is key, but in some ways we all mourn our past life if it was one where we were healthier and more mobile. The hardest thing for me is knowing that I do need help doing things or seeing that my loved ones know I'm having a hard time. The days where the inflammation in my spine is up and I don't feel like doing things, that gets me pretty hard. I hate just sitting around being too tired to do anything.
However, I focus on the good things too, what I have and what I'm still going to do on this planet while I have the opportunity to do so.
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Post by Justine on Jun 14, 2013 2:54:23 GMT -6
I also went through a period of depression post-op when I realized that some symtoms were still lingering. I would often ask God "why me?" I wondered if I did something to deserve this fate. But now five years after my surgery, I realized that God doesn't waste our pain. The worst experiences often make us stronger than what we thought we can ever be. I think all of us here have been through a traumatic experience, but we are still alive to this day supporting each other and using our past hurts to benefit others.
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Post by soheil on Jan 29, 2018 4:59:32 GMT -6
Hi everyone,
I m 38 and was operated for grade 2 ependymoma in june 17.My ependymoma was removed successfully, however when i woke up from surgery i was unable to lift my left arm. Still after 7 months i cant lift it up at all despite PT, my fingers, wrist and tricep are functioning apart from my bicep and shoulder.
I m going through depression daily, its so frustrating even typing this as my fingers are not coordinating. Godforbid has anyone else experienced such situation, losing a limb?
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Post by fluffhead77 on Mar 13, 2018 0:00:52 GMT -6
Hello Sohell,
I'm 40 and they removed a stage 2 ependymoma from inside my spine 3 years ago. Mine went from T9-L2 and out the bottom of my spine. They removed all but 5% of the tumor so I had to go through 28 treatments of radiation to kill the rest. My right leg was not moving at all after the surgery. Since then only certain parts of the leg ever came back. My quad muscle never came back so my thigh sags and I'm able to walk with the use of a leg brace. It never killed my spirit because before surgery my right leg was going numb after standing for 5 hours. It sucks that I will probably have to use a leg brace the rest of my life but it could have been worse. If they hadn't found this tumor then I would have ended up paralyzed from the waste down in another year. They said my tumor had been growing very slowly for 20 years. The only thing that I hate is the damn nerve pain everyday from my thigh down to my toes. They have me on 900mg of neurontin 3 times a day. I find that marijuana also helps me forget about that pain for short time and helps put me in a better mood. Good luck to you and try to stay positive.
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