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Post by kathyb on May 13, 2012 12:40:00 GMT -6
Hi Vinny, I agree with Suzzie. Good luck, this is a great place to get support and information, Kathy (ependymoma c2-c7, April 23, 2011. Eric Sipos, MD, Tucson, AZ)
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Post by Pierrette on May 23, 2012 17:06:56 GMT -6
Vinny,
I was diagnosed with a tumor- no one knows really what it is , in 2009 and after reading all the stories here and on other sites, I decided not to have it operated on and to watch it. I was not suffering all the dramatic symptoms that others have written about just a bit of numbness and some minor back issues. It has been 5 years and the tumor has not grown one bit. I caution you - all of you who have these tumors and do not really suffer the complications form them to NOT do the surgery and wait as long as possible. It seems to me that if the surgery will diminish your quality of life then why go forward with it. I get an MRI every year and as long as this tumor is nor growing substantially then at my age, I will live with it because as far as I can see the alternative is life changing and often not so good. One of my Doctors said- " Don't let then make you worse until they can make you better" . I appreciated his perspective.
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Post by emily on Jul 31, 2012 9:52:55 GMT -6
Hi, I just found this group. It is helpful to read about what others have experienced. I was diagnosed with an ependymoma from the base of my brain through C-6. I had very minor symptoms prior to my diagnosis: just some slight neck pain which was first thought to be arthritis and later a slight difficulty doing intricate work with my hands.
My surgery to remove the 7 centimeter tumor was in early December. 11 hour surgery. Total resection. Recovery started out quickly. I could move hands and feet but had extreme loss of sensation on my right side. They got me walking after a couple days and I went home after a two week stay of in patient rehab. Sensation began to return when I got home but after a few weeks went away again.
I am now about 8 months out. I can function quite well. I continue physical therapy but have had to change therapists a few times to find someone that understood my particular condition and not treat me like a stroke patient. I now go to the Rehab. institute of Chicago. They are the first to address my neck pain and stiffness. So far occupational therapy has not helped my hand function much. With the loss of sensation I can't really do the little tasks/ games they give me. Frustrating.
My main issues are neck pain, the loss of sensation in my right hand. Before this I was an artist, played piano, a very hand centric person. Not being able to write/ draw/ paint etc has been difficult. I remind myself that I am lucky to have my life and be able to walk etc. but it is still hard. A big part of who I am has been taken away. I am learning to deal with it.
My numbness however has continued to worsen, very gradually to the present and no one really knows why. Kind of scary. When will it stop? Soon I hope! I welcome any words of advice or suggestions. Thanks for being here!
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Post by emily on Jul 31, 2012 9:56:05 GMT -6
Oops, I should note that my loss of sensation is my whole right side below my neck. It is just my hand that is hardest to deal with. I walk with a cane. :-)
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