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Post by Teri K. on Sept 10, 2008 9:23:34 GMT -6
My journey begins in 1982 when I was 20 and continues today. I suffered with varying symptoms until my diagnosis in 7/1985 and first surgery completed on 7/31/85. My first tumor was diagnosed as a myxopapillary ependymoma from L1-L4. A reoccurrence and second surgery of the lumbar area was completed on 12/19/1989. Radiation treatment of the lumbar area occurred in 2/1990 for 6 weeks. My third reoccurrence and surgery of the thoracic area was completed in 6/2005 with 6 more weeks of radiation of the Thoracic spine. From this point forward close monitoring with full spinal MRI's has occurred and numerous small tumors are monitored for growth or neurological symptoms. My neurologists seems to quarterback most of my follow up. When I began this journey the MRI did not exist,and CT and myelograms were the choice method for detection. It is amazing to see the advances that have occurred over time with my first MRI being on a .5 Telsa strength machine to my current scans being done on a 3.0 Telsa strength. I believe amazing things will happen in spinal cord tumor research over the next 10 years so keep moving along everyday because tomorrow will always come and bigger and better things await.
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Post by Maureen on Jan 25, 2009 11:16:42 GMT -6
How are you doing today? What has been happening in your treatment and progression? Hope you are well and look forward to hearing from you!
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Post by shyamalaramraj on Feb 15, 2009 0:36:28 GMT -6
do you any idea about cyber knife treatment??
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Post by Teri K. on Feb 24, 2009 14:39:24 GMT -6
I was sent for an evaluation to possible do the cyber knife treatment. This was January of 2008. I currently am in a wait and watch mode and will reconsider the cyber knife if one of my lumbar tumors continues to grow bigger and cause symptoms.
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Post by profjack on Mar 1, 2009 18:11:15 GMT -6
Hi All,
I have just joined as a member. I need to put down my whole story here soon. I had my last surgery (of 3 - long story) on myxopapillary ependymoma in Sept 2004. I had been great until about 2 months ago but have started to have symptoms. I am getting an MRI next week and I'm pretty much expecting bad news. I haven't had an MRI for nearly 4 years - I know most people do, but I reckoned my body would tell me soon enough if there was a recurrence (might not be everyone's approach, but I really wanted not to think about the long term possibilities for a while).
TeriK - you have quite a long experience of the whole thing - I have a question - Is it your experience that tumor growth was a steady progression or in 'bursts'? I notice that your first and second surgeries were only 5 years apart and the second and third were 15 years apart.
Also, has anyone had a lot of trouble with scar tissue/arachnoiditis? I have had and wondered if it was a common problem.
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Post by Teri K. on Mar 7, 2009 15:25:14 GMT -6
The first reoccurrence of my tumor was quick. I had regular annual lumbar MRI's and just out of the blue on my annual MRI the tumor had grown quickly in one year. I did not have any new symptoms with my first reoccurrence so it was a shock. My second reoccurrence was in a new area of my spinal cord and was with numerous tumors varying in size. I did have symptoms which prompted me to go to the Dr. but I never even thought about the reoccurrence of my tumors in a different location on my cord. The doctors had always just recommended lumbar MRI's and that is what I did on an annual basis. I would say that my third time around must have been at a steady progression because of the length of time between occurrences. They do classify the new tumors as drop metastases of the original myxopapillary ependymoma that was in the lumbar region. I guess it is a learn as you go situation. I did do radiation treatment after the first reoccurrence so maybe that is why I didn't feel any new symptoms for 15 years. I also did radiation with my last surgery in 2005 because most of the tumors were inoperable at that time.
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Post by profjack on Mar 7, 2009 18:47:12 GMT -6
Thank you Teri K. - that was useful. I was expecting a recurrence at some stage as I only had a partial resection. I guess I was hoping for a decent interval between ocurences. At the moment I am fearing the worst. Also the last surgery was extremely difficult because of scar tissue also. Anyway, I'm a little in the dark on the whole thing until I get an MRI. I'm sure I'll be on here to report my news, and perhaps ask advice. I also hope I can give some. Thanks again.  |
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Post by shyamalaramraj on Mar 12, 2009 23:48:38 GMT -6
What are the symptoms for the growth of tumor? what are the side effects of radition? Could you please expain.
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Post by profjack on Mar 13, 2009 13:46:14 GMT -6
Hi shyamalaramraj, First of all, can I ask, what stage are you at? Has your tumor been diagnosed as a myxopapillary ependymoma? Myxopapillary ependymoma's of the spinal cord are usually found in the conus medullaris and filum terminale region of the spine (i.e. lumbar and sacral region). They are indural (i.e. within the spinal canal) and extramedullary (i.e. growing around the spinal cord roots). They are almost always Grade 1 - benign and slow growing and may have been growing for many years before they even produce symptoms. They can sometimes spread to other parts of the spinal cord but almost never metatasize to other organs of the body. Radical surgery to completely remove the tumor is the best option. Often the tumor is too involved with the nerve roots to be completely removed. In this case subtotal resection is performed - sometimes followed by radiation, although the efficacy of this is of some debate. Following is a link that is fairly readable www.pathconsultddx.com/pathCon/diagnosis?pii=S1559-8675(06)70412-0#definition. Symptoms of the growth of tumor are usually pain, back pain, leg pain and sometimes loss or reduced motor or sensory function (leg, bowel, bladder, sexual function). Please feel free to ask as many questions as you need to - and please don't sit in front of a PC alone reading all the worst case scenarios crying to yourself - I've been there! You need support. Try to tell us more or feel free to contact directly. Everyone, please feel free to contradict anything I have said, I am by no means an expert. |
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Post by profjack on Mar 14, 2009 7:27:53 GMT -6
First of all - good news from me - I have had my first MRI scan for 4 years and there has been 'no significant change'. Obviously this is good news. However, it has not made me as happy as you might expect - I still have symptoms which have changed dramatically in the last 2 months. It appears from the radiology report that epidural scarring (which I have had from all the surgery) combined with disc bulging is to blame. I have been keeping the scarring/arachnoiditis under control with Zydol (Tramodol) 100mg daily for a few years now, but it appears that the disc bulges may have gotten worse recently. I have disc bulges for a number of years, in common with a lot of adults, but obviously all of the surgery hasn't helped.
Has anyone had any similar experience? Any advice?
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