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Post by ketmurphy on May 25, 2011 16:15:13 GMT -6
I appreciate everyones feedback and the words of encouragement. I'm very optomistic on the long term prognosis for this type of tumor and am thankful that after almost 8 weeks post surgery the only challenges I face are some minor balance issues along with continued numbness from the chest down although both appear tYo be improving each day. Thankfully I have no pain to speak of. Best wishes to each of you for continued good health, thanks very much.....kem
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Post by chefpattyo on Jun 18, 2011 20:33:33 GMT -6
I have the same tumor and unfortunatly am told it cant be removed.But about radiation Iwas told by my Dr. that radiation is not good to have after surgery for ependymomas due to the fact they break down your scar tissue and if you ever needed surgery in the future it would be harder to heal. What doctor performed your surgery?
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Post by ketmurphy on Jun 21, 2011 18:09:21 GMT -6
Ma'am, I had my tumor removed at Portsmouth Naval Medical Center in Virginia. Dr Ronit Gilad was my NS and I have nothing but the highest praise for her and her team. I wish you all the best and hope everything turns out fine for you. Warmest Regards KEM
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Post by lcamporelli on Jul 10, 2011 22:38:32 GMT -6
Hi! I'm new to this supportive website. I have been very recently diagnosed with an intradural, intramadurally ependymoma, 7.6 mm at L1. It was found by way of accident as I had an MRI of my Lumbar spine due to 30 years chronic pain and numerous epidural injections. I have been referred to a neurosurgeon at UCSF and have undergone 6 MRI's and 2 CT Scans, a eurodynamics test and a cystoscopy and having two more CT Scans of my chest on July 11 to rule out Sarcoid. Although my tumor is small by comparison, I'm concerned as it's not suppose to be there at all. I am undergoing a microdiscectomy towards the end of August for my low back and hope that all of my leg/back pain is resolved by this procedure. I'm being told, right now, that it looks as though monitoring the growth of the tumor is my best plan-of-action at this point, since I have no symptoms. I understand that if I do develop symptoms that they will not go away with removal of the tumor. I'm confused as to what I should and should not do. Ugh!!
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Post by Kirk Spencer on Feb 6, 2013 6:53:55 GMT -6
I had the same tumor in 1999. No radiation as it too was benign. What I have suffered with is PTSD and severe depression. I too had numbness on my complete right side...legs, arms, chest, hands. After 12 years I still have some numbness although it is isolated to just some parts.
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Post by pringleman on Jan 21, 2014 3:31:57 GMT -6
I am one of the few that had radiation after surgery. I had my resection in April 07 followed by radiation treatment. I had an intermedullary tumor from C3-C6 and I am doing fine today. I also had a grade II. The reason I had the radiation was because the Oncologist said that without radiation I have a 15% of reoccurence and with a small dose of radiation I would have less than 1%. I was 34 and did think the odds were in my favor with radiation. I have no symptoms from it and even during radiation I did not have any at all. I did not get sore or red or have any complications. Maybe for me it was a piece of mind. I was also told that it does help with scar tissue formation as that was important to me as the Spinal Cord does not heal across the scarring. I cant say for sure if it helped or not as I am who I am today. I lead a Healthy life with the remains of the surgery of course. I have the stiffness and numbness but I knew I would be left with a considerable amount. I saw the most improvement from the 3-6 month range but then it tampered off really quick. In my opinion, I made the right choice as my case was reviewed by a Board of NS and Oncologists and they all agreed on the course of treatment. I went to a top notch Hospital and I listened to their suggestions. However, any choice made with information given is the right one in my mind as this is serious business to make sure you never have to deal with this surgery again. Just wanted to chime in. Tony Very good to hear a radiation success story!!
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