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Post by shyamalaramraj on Mar 17, 2009 10:59:44 GMT -6
Hi profjack: In fact the patient is my son aged 20 years now doing his second year engineering graduation. Since he was complaining acute back pain, MRI was taken on Jan 19th last year. Within the next couple of days, surgery was done to remove the tumour. From biopsy report it was revealed as Myxopapillary Ependymoma Intradural Extramodullary sol. Only 50% of the tumour could be removed and balance 50% attached to cord and root were left untouched. The 2 MRIs taken after the surgery did not show any demonstratable change. The next MRI is due in June this year. Meantime, when shown to a radiation oncologist, he suggested for immediate treatment but warned 1/3 probability that my son may be paralised. So I decided not to rush to the decision and approached the surgeon. He told that between radiation and the first surgery, there is a concept of relook surgery. Since the surgeon is now familiar with the patient in terms of stamina and other physical aspects, he can go further to remove the tumour. He also told that there is a latest technolgy surgical equipment available in Japan which can facilitate to remove physically the max tumour from the cord and the root. Since radiation is not reversable and once damage is done is done, he suggested that I should wait till the next MRI result and then decide. Since he is very young and he should be able to withstand to the surgery in case it recurs, I prefer to go in for surgery before I go in for radiation. For radiation, there is cyber knife technology has come. You have any idea about the success rate of this cyber knife. I can take chances if there is 1 to 5% failure but I cannot take chances if it is 1/3!
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Post by profjack on Mar 18, 2009 15:17:14 GMT -6
Hi Shyamalaramraj: I want to say that I am no expert, but I will try to weigh my words carefully, I am sure it is an emotional time for you.
I am also an engineer, so he and I have something in common. Firstly -has your son repeat symptoms? If not, I would say he would be better waiting - he may be fine for years. Secondly, I would agree with you about radiation, as far as I know it is not proven to be very effective against ependymoma's. Also, dramatic statements about paralysis may not be helpful - many of us function very well for many many years - just ask Teri.K! I agree with your assessment of surgery instead of radiation, but even then, only if needed. Surgery produces scarring, so the less the better too.
I don't know where you live and perhaps you are quite happy with the neurosurgeon - but my suggestion is to get a careful considered opinion from a neurosurgeon who specialises in brain and spinal cord tumors. I went to New York to Dr. Karl Kothbauer (from the Fred Epstein school) but he has since moved to Switzerland. I suspect whoever you see will recommend doing nothing until pain/deficits necessitate another surgery and then to have the most radical surgical excision possible. I am afraid I know nothing about cyber knife - maybe someone else will.
I don't know enough about your son, but it sounds like the best thing might be to get an MRI annually and get on with living his life. I hope I do not pretend to be an expert.
Since we have quite a lot in common, if it would help him to speak with someone who has been through this, I would be quite happy to email or talk to him if he would like.
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Post by kevinlee on Feb 2, 2011 16:59:27 GMT -6
Hello Terri,Shy and Pro, I hope you are all doing good dispite the ongoing issues. I too had a Max Ep partially excised from T12-L2 region with drop met at S1-S2, the drop lesions are remaining quite small they where not an issue when I had surgery in Nov/07. At this stage I am concerned with regrowth and I am having annual MRI and todate there has been no significant regrowth (fingers crossed). The tumour at T12-L2 had caused nerve damage and left me with foot drop, bladder,bowel and sexual disfunction but I am managing well. Thanks for lending an ear and I look forward to reading your input, all the best.
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Post by mdennis32 on Jul 20, 2012 14:27:13 GMT -6
Hi.....I just had an MRI that showed a 6mm myxopapillary ependymoma. I see a NS for the first time next week and I'm really scared. The only symptoms I had were back spasms in February and again in June. My gp sent me to an orthopedic dr. Who sent me for the MRI. I've been reading up on this since I got the report. There are no CERN centers near me in Cincinnati. I don't know how to find a NS who is familiar with this. Is it necessary to travel? I have 2 young children and don't know how i would manage that. Any help would be so appreciated.
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Post by crystal on Dec 11, 2013 2:04:21 GMT -6
My daughter has been diagnosed with this tumor this year.. She had surgery in April 2013 to remove part of it..they also took her l5 and s1 bone out of her back..the tumor measured 10cm by 5cm..they only removed the growth not the root of the tumour. She was great after surgery, but now it has grown back bigger since April..she is starting radiation in the new year..she is in so much pain and is on a great deal of pain medication she is 22 yrs old she has bladder and other problems because of this tumor..my question is...will she ever be pain free or is this what she has to live for? I'm scared for her the surgeon doesn't want to performe surgery on her again so I'm loss at what to do for her....can anyone help me to help her?? Thanks so much
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Post by klee on Nov 17, 2014 12:40:19 GMT -6
Very important to find a good Neurosurgeon and don't be shy ask a million questions also important that they remove as much as possible. Usually the deficits that you have before surgery will be there after. Its good your on this site also there are others like CERN Foundation etc... All the best !
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