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Post by von on Oct 25, 2012 10:10:56 GMT -6
I'd recommend a second opinion.
I was operated on at Barrows in Phoenix. Think they rank 8th in the U. S. for neurosurgery. I have a intrameduallary ependymoma tumor from the T10-L2. My surgeon told put me on the table and did laminoplasty, resected enough to biopsy, and popped a cyst running the length of the spine. It's on the far end area of the spine. He said it's be too dangerous to risk cutting it all out so decided not remove it during surgery. I ended up doing radiation therapy post surgery.
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mom22
Junior Member
Posts: 11
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Post by mom22 on Dec 19, 2012 13:23:59 GMT -6
Hiya Maryam, Is it possible you could get a second opinion? My tumor is in the spinal cord in the neck area. I had an op to try and remove the tumor. They couldn't take all of it, due to it being entwined in my spinal cord, it would have completely paralysed me if it were to be removed. As a result I have to have radiotherapy. Did they say what grade your tumor is? From my understanding a grade 2 tumor will continue to grow, albeit slowly. I think to be honest it doesn't matter the location of the intramedullary tumor, they are all very rare. I hope you get the answers you need xx
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mom22
Junior Member
Posts: 11
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Post by mom22 on Dec 19, 2012 13:27:00 GMT -6
Mine also was in the neck area. C1, 2 and brainstem making too risky to remove all it. They did remove most. I also needed a drain for the cystic portion. I worry about re growth and suffer from some numbness, burning, tightness in the neck area, but am glad t be fully functional. I would not be if they tried to remove all of it and might be ventilated too.
It is always good to get a second opinion.
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Post by peaceandlove on Dec 20, 2012 6:45:43 GMT -6
Hy maryam,
I have same youur case.I have tumor in T10 to T12.I did a laminectomy and the doctor say he coudnt touch it.Sincerly i Blame the doctors who go for such surgery.Why they dont just say :"we dont know how to deal whith such Tumors" Why i say that? Since i see later after my surgery some good Neurosurgon and he say : I am performing such resection typically and with success.For the time being i am suffering numbness, tingling, hips pain all...It is a pain in...I live hard.I did surgery same like yours with no use.Mine is gabglioglioma and astrosytoma.If you need more details dont hesitate to message me.Keep in mind there is always hope, and a also choose your good doctor, and nothing is sure after surgery since people and doctors are not god.
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Post by Jersey Girl on Jan 10, 2013 12:16:02 GMT -6
Hi. I was diagnosed 8/12 with an ependymoma at T11-T12. However, it was found because I fell and herniated L5-S1 which then crushed a nerve root and gave me foot drop in my left foot. I had a microdiscectomy of L5-S1 in August and my neurosurgeon has decided to wait on the removal of the SCT for now. I'm scheduled for another MRI next week to see if the SCT has grown or what the situation is with that.
The doctor said the left leg problems seem to be caused by the lumbar herniation and they are getting better. My main residual from that is no dorsiflexion - foot-drop. I got a brace for that last month and it seems to be doing the trick. The numbness in the leg is deminishing.
Right now I'm in a wait and see mode. I'm very interested in the info about Dr. Jallo. A second opinion is always good. In my case, it would really be a third opinion. I was diagnosed originally in my local medical center. I presently go to New York Columbia Presbyterian, to the Director of their spine center, where I went for my second opinion and surgery.
At first he wanted to remove the SCT right away, but then the crushed nerve root in the lumbar spine was the primary concern. Now that the two issues have been separated in his mind, he's decided to wait a while and see if the SCT is growing.
I'm open to any suggestions anyone has.
Thanks.
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