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Post by rhiannon on May 30, 2015 15:59:12 GMT -6
Hii all. My Partner was recently diagnosed with a Intramedullary cervical spinal tumour. He had an operation in January to determine grade of tumour. His results came back and the surgeon said he could only give him a result of "a probable intramedullary spinal cord astrocytoma" He said he used the word probable as he didn't want to rule out any other possibilities. He has since said he is to have no therapy just observe with mri. He said it was an impossibility to remove any of the tumour. It is a progressive tumour as the symptoms my partner had progressed quite quickly. Since the operation he is in a lot of pain and his balance is deteriorating. His right side from the waist down is numb. His slow nerve has been affected and causes him to have uncontrollable shakes when he walks. I was wandering has anyone else been in the same position as having a spinal cord tumour that is unable to be removed and what were the outcomes. the consultant hasn't really told us a lot, he can't determine what the tumour is going to do next. He said he doesn't know.
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Post by Linda51 on May 30, 2015 17:26:59 GMT -6
Hi there!!!! So sorry to hear about your partner. My advice as well as most people on here would say have his MRI film sent to Dr George Jallo @ Johns Hopkins in Baltimore, MD. Dr Jallo has a lot of experience with SCT and he will look at his MRI for free. Email address is gjallo1@jhmi.edu If your partner can't go to him he may also be able to tell him of another NS closer to him if he/she is good.
Tell him to hang in there and don't give up!!
~Linda
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Post by dmdgood on May 31, 2015 5:34:54 GMT -6
Hi Rhiannon. I'm sorry about that news also. Can you say where in the cervical area the tumor is? Also, what is the reason that the neurosurgeon has said that it's inoperable? Get a second, or even a third opinion if necessary.
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Post by rhiannon on May 31, 2015 8:59:49 GMT -6
I'll have to check with My partner. He said it was because it's inside the spine at the back it would be dangerous to remove as it would mean taking part of his spinal cord. Not sure if I'm understandable in what I'm saying. We are both very confused as he said a biopsy was all he could do and that the biopsy was pretty much a necessity as his symptoms were progressive. Although if it was never an option to remove I don't see why they needed to do a biopsy as it has left him worse off and he's still in the same Position. They have said he's not having any therapy just monitor using mri. They haven't given him any possible outcomes just we will see you in 6 months.
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Post by Guest on May 31, 2015 15:35:47 GMT -6
Hi Rhiannon,
I recently had an Ependymoma SCT removed at the C2. My tumor was taking up 98% of my spine so the neurosurgeon did emergency surgery and was able to remove 80% or so. I am now doing radiation soon to remove the rest. The C2 is very high and the risks are high. My tumor is also in the cord.. It is important to find a doctor who has done these before. Go to cern.org for a good list of health systems. I can walk and talk and function pretty well. I am numb and my feet and hands have less coordination but that is pretty normal for these. Ask questions and hang in there.
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Post by dmdgood on Jun 2, 2015 3:32:31 GMT -6
Hi Rhiannon. I can only speak from a personal perspective rather than give medical advice. I am 'watching' my tumor, which is high up in the cervical region and also intramedullary, since I was diagnosed in January this year. I have had opinions from a number of surgeons, and none of them have actually said that its inoperable, only that the risks of not operating need to outweigh those of operating. That is, you would only want to get in there if you are worse off or about to be worse off given the recent behavior of the tumor. And I was also advised against biopsy as, if they're going to go in there, they might as well attempt to get it out. Else, a biopsy often does not result in any more intelligence than observing what is happening. As I understand it, at the end of the day, it doesn't really matter what the tumor is, but what it's doing. That is, is it leading to deterioration and how quickly, or is it staying stable? Anyway, what is done you can't reverse, but it sounds like you need an alternative opinion(s) quickly. I am hoping for the best for your partner. DM
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Post by funnywalk on Jun 11, 2015 13:45:05 GMT -6
Hi there, sorry to hear your partner has an SCT. I have an inoperable astrocytoma, but two good results of surgery were the biopsies which confirmed the type and Grade of tumour, so I know it is slow growing, and the release of compression by the laminectomy to get into the cord, which has meant I am able to walk properly again. It is true that little is known about these rare tunours but your NS doesnt sound very reassuring. Might be good to get some other opinions. Best of luck to you both.
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