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Post by Tmasgio on Sept 5, 2008 12:41:54 GMT -6
I am in St. Louis and had the Ependymoma. I sent you a PM Anne.
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Post by juliew320 on Oct 6, 2008 20:41:41 GMT -6
hey all just wanted to say hi. I just joined. I have an ependymoma tumor on my spinal cord in the T5 region. Had surgery on it and the doctors were only able to remove half of it. the other half was so tangled around nerves and spinal cord that they didn't want to cause more problems than what the tumor caused. It basically gave no feeling from my knees down but other problems from my waist down. oh i was diagnosed in 1999. and i am wheel chair bound from it.
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Post by laurahu on Nov 7, 2008 20:21:51 GMT -6
I am new to the board. I still haven't found out what I have. Either Ependymoma, Schwannoma, or Neurofibroma( Pcp says). Haven't spoke to neurologist for 2 wks and still haven't seen a neuro surgeon, so not really sure what I have. I live in Camdenton Mo which is about 3 hrs from St. Louis. If you could give me some names I would appreciate it. By the way the neurologist told me that if it is an ependymoma, ALL!!!!! they would have to do is make an incision, drain it, and fill it with fat. From what I have read here he was dead wrong.
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Jack
Full Member
I will ride again!!
Posts: 31
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Post by Jack on Nov 9, 2008 15:17:29 GMT -6
For all in Physical therapy or about to begin: Positive mental attitude is key. ;D Give 110% effort in the PT routine. Physical therapy became my job and is currently still my only job to regain as much of my body function as before I went under the knife in 2007. Don't skimp on the hard work needed for good results. For all who have not had surgery yet: Choose your neurosurgeon wisely. Their skill is imperative to your final outcome. Ask a lot of questions and see how many operations have they performed similiar to the operation you need. My first NS at Sloan Kettering in NYC said he did 2 per year. The next NS at Columbia Presybeterian does one per week and is in the 100 top Dr.s in US review for the last 7 years. I went with that Dr. and had an excellent outcome with some deficits. He did save my life when there was a blood clot and paralysis the next day and had to do emergency surgery. Make sure he has the patience to explain the procedure and is honest with you about the risks. I felt comfortable with my surgeon and still think he was my best choice. Jack
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Post by itsallgood on Nov 11, 2008 20:26:26 GMT -6
Mine was from T12 to L4. It was encapsulated. It arised from the conus and was thoroughly entwined the plexus. My NS was Dr. Grant Skidmore -- Norfolk VA ~2002. With his colleague (Dr. Waters) and a NS in training (don't recall his name) they performed a lamenectomy and resection. I was never fused -- they thought I was much too young to have my spine fused. I can't thank them enough for what they were able to do since I am walking, I dont seem to have any sensation loss -- albeit it's been many years of healing to achieve where I am today. My only negatives are a) back pain -- usually from low pressure systmes, get a hit to the low back, or excessive physical work and b) no longer have knee reflex reaction.... it's actually kinda fun when I go for a physical and new students are perplexed by a nonreaction.
I've had my share of challenges, pain, fatigue and discouragement. But never overlook the little improvements that occur over the long run of your own personal challenge. You might miss something that was a long term gain and you just didnt think about it due to day-to-day life obligations.
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Post by bobmiami on Dec 31, 2008 9:25:25 GMT -6
Laurahu, et al Welcome to our "club" - sorry you had to join us, of course, but you are certain to find value, comfort, wisdom, and guidance here unlike any other source.
Both tc and I are in the "wait and see" club. We both have C6/7 tumors BELIEVED to be Ependys. Dr. Jallo told both of us to Wait.
Check the general forum. THe BEST info is there. There is a thread about deciding WHEN (or NOT) to have surgery. You will want to read all of that.
Meantime, ask away.
Bob
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posma
New Member
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Post by posma on Feb 3, 2009 4:05:59 GMT -6
Dear All.
I have ependymoma on T11-12, removed on the last July-2008. Unfortunately, the tumor could not removed perfectly,residual tumor which tightly stuck to the nerve was remain. I did nothing for almost six months after surgery except monitor the residual tumor by using MRI. Please advise, what I have to do next, especially with the residual tumor. The doctor advise me to have radiotherapy, any of you have the experience with that therapy ? I have not decided yet till now, I hope can find the answer from all your experience. Thank you and God Bless you all. Regards. Posma
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Post by betty on Feb 10, 2009 0:28:20 GMT -6
Hi Posma, If you post on the general forum with your question more people will see it. What city do you live in? Betty
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Post by KWallgren on Feb 11, 2009 15:13:58 GMT -6
Hello, I found this message board and see there are some questions about ependymoma. Please take some time to visit the new website for the Collaborative Ependymoma Research Network, commonly referred to as the CERN Foundation. www.cern-foundation.orgThanks!
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Post by chickiet on Feb 12, 2009 10:41:57 GMT -6
Hi Julie - Have you had surgery yet? I'm guessing the answer is "yes" because you're told you have an ependymoma. Your NS can speculate on the type of tumor you have based on your MRIs, but it is not definitive until the tissue is examined by pathology, which means that some or all of the tumor would have to be removed.
While ependymomas are typically benign, not all are. Tumors are classified as Grade I - Grade IV; it is a World Health Organization (WHO) classification. From everything I've read and learned from my NS, Grade I is benign. Grade II is a slow-growing malignant tumor. Grades III and IV are the agressive types. I would request a copy of the pathology report that was done on your tumor - you should get the classification from that report.
Syringomyelia means that you have several syrinxes or cysts within your spinal cord. Sometimes the cyst/syrinx can be related directly to your tumor, and when the tumor is removed, the cyst or cysts go away.
I have two syrinxes in my spinal cord. One was surrounding the tumor and the other was slightly lower in the spinal cord. While we expected/hoped that they'd go away when the tumor was removed, I was not so lucky - they remained. And the one in the location of my tumor expanded over time. Over the course of the year since my initial surgery, that syrinx got bigger in diameter, meaning it was pushing more against the nerves in my spinal cord. The lower one pretty much stayed the same. At the same time, I was experiencing more lower extremity pain and numbness and was requiring more meds to stay comfortable.
I had a third surgery this past September. One of the goals of that surgery was to insert a shunt into that larger syrinx. My NS opened me back up and put a small tube inside the syrinx - he called it a K-tube because of how it's shaped. Anyway, the goal of the shunt is to drain the spinal fluid out of the cyst and back where it belongs.
As of my last MRI (in November) the shunt appears to be working. The larger syrinx is much smaller in size (smaller than it's ever been since my first mri), and the lower syrinx is also smaller. And I'm feeling better and am reducing some of my neurological pain meds.
I'm not sure this is any help, but that's what I know about ependymomas and syrinxes. If anyone has any questions, please feel free to message me or post here.
Chris
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