Guest guest Posted March 23, 2011 Report Share Posted March 23, 2011 Hi Margaret -- I emailed you off-list but I guess you didn't get it. I live on Vancouver Island and had my surgery in Vancouver a few years ago for TC and a spinal fusion last summer. I am originally from out east, growing up in Montreal and went to university at Waterloo. My extended family lives in Toronto, London and Dresden so we make the trip east every year or two. I had my TC surgery done at Vancouver General -- fatty/tight filum. My case is a little unique in that I also had spondylolisthesis so hard to know for sure how much of my problems were TC related as compared to the spondo. My NS recommended the TC surgery first and re-assess. I did end up having the spinal fusion for the spondo this past summer. I was diagnosed with TC at the age of 36 -- although I had back and leg issues (pain) since the age of 18, without MRIs available I was never properly diagnosed. I didn't have TC surgery til I was 42 as I had differing opinions and didn't know what to do... so did nothing. In hindsight I wish I'd done the surgery when diagnosed as I continued to have nerve damage develop in one leg which hasn't improved, but hasn't gotten worse. Biggest improvement was no more aching legs unless I walk too far but it goes away now as soon as I stop. To be honest I had a long recovery from the surgery, it took over a year to see results, but I can say for sure that my leg pain decreased significantly and I hope I have halted any further nerve damage. I have no regrets doing the surgery, just wish I'd done it sooner. I did the second surgery to hopefully decrease my back pain more and increase my walking ability. My walking has improved but this surgery seems like a long recovery too -- the NS said 1 1/2 year of healing should occur before I plateau. I worked really hard with my physiotherapist doing pilates based exercises for a year before the surgery, and swam a lot. Those were the two things I could do. If you have any questions please let me know. I found my neurosurgeon through my neurologist -- he said he was the best one available that I could go to in BC. You really need to get your GP to refer you to a neurosurgeon - actually two, to get a second opinion. Do NOT take no for an answer. If he does not know who is the best ask him/her to call a neurologist to see if they can help you. You can also log onto the spina bifida chat room in the link I posted and see if anyone has recommendations. Don't be surprised if your GP knows nothing about this condition -- I have not met one health professional (including the nurses on the spine ward at the main BC trauma centre) who knows anything about it. My physiotherapist etc have done research to better help me. Please don't hesitate to email me if you want any more info. Where do you live? Dee To: tetheredspinalcord From: patientperspective@... Date: Wed, 23 Mar 2011 02:03:34 +0000 Subject: Re: Ontario Spina Bifida & Hydrocephalus Association of Ontario - for Margaret & Jackie hi Dee, do you live in Ontario? do you mind me asking who your neurosurgeon is, have you had a cord release surgery? what results have you had? thanks Margaret > > > Check out this website -- some resources here -- lots to sift through. There are some links which may prove useful, eg neurology centres / treatment centres (although the treatment centre list seems to be geared for kids). > > Dee > > http://www.sbhao.on.ca > > http://www.sbhao.on.ca/search/node/tethered%20cord > > > Quote Link to comment Share on other sites More sharing options...
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