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Tethered Cord Surgery
I am a 56yr old female, born w Spina Bifida...I had spinal closure at birth and have not had any spinal surgery since then...I recently had a lumbar MRI due to severe back pain and leg muscle weakness...it was discovered that I have a "tethered cord" condition...I saw a neurosurgeon who wants to do surgery to release the tethered condition..He gave me the following percentages of the outcome of the surgery:....10-15% could get worse, 25-30% wld remain the same and a 50% chance of it getting better...I am VERY apprehensive abt having surgery at my age given the fact that there is so much built up scar tissue after all these years...Neurosurgeon said that he feels that without the surgery I am going to continue to loose the strength in my legs and will end up in a wheelchair in 5yrs...I wld appreciate your thoughts on this condition and whether you feel that I shld have the surgery or not...thank you...
well, I printed out the Chiari Institute 10 page questionnaire,which I have to fill out and return to them along w any recent test results, Cd's,etc. and then my case goes before a review board which meets every Thursday I was told....I then have to wait for someone to get back to me w some sort of answer for me...I was told it could be several wks before I hear from them...they definitely sound like the right place to go and I thank you again for bringing it to my attention....I will let you know as soon as I hear from them....
Thank you so much!!!...I had not thought of that.....I will definitely look them up and let you know how I make out!!!
You can contact any Chiari specialist as they treat all related conditions...TCS,IIH,ICP,CCI,CMI,.....
The Chiari Institute is in Great Neck, NY....look there and see if they can help.....
Hi!!!...thanks for your input and I also have hydrocephalus which is also related to or same as Chiari malformation...I had a shunt placed soon after birth but it has since stopped working...I was only abt 3 when it stopped working but it is still in place...I have yearly CT to check placement of it and any changes that may have occurred...My neurosurgeon requested another CT and a shunt series of X-rays, which I had done a few months ago...Since this is not a common problem it is difficult to find a Dr. familiar w the condition...I am searching for another neurosurgeon for another opinion but my gut is saying just live my life now and wait to see what happens....I will keep you informed as to any decisions I make...Good luck to you,too!!!
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Hi....I too have tethered cord...but I do not have spina bifida, I have Chiari Malformation which is related to SB......
I was told I should have the cord released....and as you stated the odds of re-tethering is there as well as some symptoms remaining...for this reason and that I do not have as many issues with mine as you, I am holding off on the surgery...as it also seems to be a slow recovery and I also have a condition EDS,which causes me to heal even slower...so, I will have surgery if and when my symptoms/issues change....for now....I have bowel and bladder issues and low back pain as well as leg pain......
What I would do if I was in your situation is see a few other Drs that specialize in this surgery and compare what you are being told...and go with your gut.
Good luck and let me know what you decide.