maxopapillary ependymoma
 

Hi there,
I am wondering if anyone has any treatment / cure suggestions for the above condition. I have tried everything I can think of over the past 20 years, including surgery, radiotherapy and every kind of natural therapy, herbs, acupunture, faith healing, meditation, osteopathy, nutrition etc. I am walking with a limp (more severe these past 4 months) and take drugs daily to manage the pain. I work full-time, and have my own business, and am studying also, so plenty to keep me distracted! Anyway, I recently heard of Cyberknife in the states, but my neurosurgeon tells me it's as dangerous as further surgery would be for me (tumour in the spinal canal from cauda equina to L5 including complete compression of S1 nerve root) so now on the hunt for other options! I look forward to hearing from anyone who may have concrete advice.
Many thanks,
G :)

Hi Gretel,

Welcome to Neurotalk. I don't know much about your specific condition but you might want to check out our spinal forum and someone there might be able to help. Or some of the rare disease subforums

Here are the links

http://neurotalk.psychcentral.com/fo...aysprune=&f=22

http://neurotalk.psychcentral.com/fo...aysprune=&f=87

Please let us know if you need any other help.

Hi Gretel!!
http://www.freesmileys.org/smileys/greet013.gifand http://bestsmileys.com/welcome/18.gif



I'm sorry I don't have any answers to your question.

I just wanted to welcome you to Neurotalk!!!

Please feel free to roam around and join in anywhere!!!

You may want to roam over to the New Member Introductions Forum:
http://neurotalk.psychcentral.com/forum88.html

More people tend to read that forum and might be able to give you more assistance in finding answers.

I look forward to seeing you around the boards!!
:hug:
Abbie

Hi, Gretel! :Wave-Hello: Welcome to NeuroTalk!

I don't know where your surgeon came up with the notion that CyberKnife was dangerous..
I just underwent CyberKnife treatment for my Atypical Trigeminal Neuralgia two days ago. This was done on the base of my brain. While I can't claim a lot of good results just yet, I can tell you that it is completely non-invasive and done as professionally as you would expect. Each case is not handled like a conveyer belt operation but by a skilled team of Doctors including 3 neurosurgeons, a Radiation Oncologist, Physicist, two nurses and two radiation therapists. Mine was done at the CyberKnife Center in St. Paul MN.
I'm a little on the headachy side right now and have an upset stomach but I'm told that it will dissipate soon.

Please seek the advice of a Neurosurgeon that has seen the results of the CyberKnife before making further plans.

Thanks so much Big foot, I have now found a neurosurg here in NZ who is familiar with CK and am booked in to see him next month. I guess my case is more complicated than it could be in that I've had extensive surgery and radiotherapy already, so the scarring and damage from this is probably causing as much trouble as the tumour itself, Anyway, certainly I won't be giving up! How are things for you now? I hope you have been able to make a full recovery. I look forward to hearing from you again if time allows, Best wishes, G

I don't know where your surgeon came up with the notion that CyberKnife was dangerous..
I just underwent CyberKnife treatment for my Atypical Trigeminal Neuralgia two days ago. This was done on the base of my brain. While I can't claim a lot of good results just yet, I can tell you that it is completely non-invasive and done as professionally as you would expect. Each case is not handled like a conveyer belt operation but by a skilled team of Doctors including 3 neurosurgeons, a Radiation Oncologist, Physicist, two nurses and two radiation therapists. Mine was done at the CyberKnife Center in St. Paul MN.
I'm a little on the headachy side right now and have an upset stomach but I'm told that it will dissipate soon.

Please seek the advice of a Neurosurgeon that has seen the results of the CyberKnife before making further plans.[/QUOTE]