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Post by leslieh5 on May 14, 2008 21:17:47 GMT -6
My original tumor was in 2001, an ependymoma at L5. They were able to remove most of it and watched carefully until 2004 when I lost my job/insurance. Since then, I have had no problems until two weeks ago. Now I have extreme muscle spasms and pain in the mid back on one side. When I lie as flat as I can (I have never been able to lay flat since the first tumor) there is a tugging sensation along my spine. I have significant damage to my nerve roots and one side foot drop and very little sensation on the other side. I have learned to live with my problems, have adapted driving, etc. and work full time in my field (teaching)...however, this new pain is laying me low and making it impossible to function. The doctor (my same PC as when I had the primary tumor) is doing tests to rule out kidney/liver problems, and waiting for the HMO to approve a visit to a neuro and a MRI or CAT. I have noticed increased numbness along my 'beltline' and have nausea from the pain (I assume)...
Can I hear from some folk who had this ugly thing reoccur? I am basically looking for reassurance, as I am TOTALLY FREAKING OUT right now.
Leslie
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Post by Linda51 on May 14, 2008 21:44:46 GMT -6
Hi Lesile,
Welcome to the group but sorry you have to be one of us. I haven't had any reoccurence but I will say don't panic until you know for sure what is going on. I have had my moments as well fearing the worse and the MRI always show it to be stable. Sometimes scar tissue can cause problems or it could be a number of things. Even though you say it was an ependymoma you had most of the time in the lumbar area it the Myxopappillary ependymoma. In those cases they can seed and come back. I didn't have this type of tumor but I know from hearing other stories from the group they can and usually do come back but not always. Ependymoma's can come back sometimes that what I has as well and I still have some tumor left but it is rare for it to come back but it rare to have one of these tumors as well so go figure.
I guess what I am trying to say is just relax and wait for the MRI hopefully that will be soon and then you can have a piece of mind. I hope it something small and not the tumor.
Take care, ~Linda
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Post by Joel on May 15, 2008 11:29:33 GMT -6
Leslie:
You have to stay calm, although it is much easier said than done, I know. If you are convinced you are doing all you can to find the causes of your current problems, then all you can do is keep busy and try not to think about it until you get some findings. Please let us know as the tests come back.
Joel
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Post by missym on May 16, 2008 6:09:19 GMT -6
Leslie, I totally understand the way you feel. As more time passes you will stop holding your breath from MRI to MRI. Please know that regular Ependymoma's are VERY slow growing and have an extremely small chance of recurrence. Symptoms from SCT's can come and go like the weather. Stress also plays a part in this. When my pain gets bad... I tend to get quite nausiated. I will keep my fingers crossed that everything is fine. Please post back and let us know.
Missy
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