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A Glimmer of Hope?

Posted Aug 25 2008 6:32pm

Yesterday the neatest thing happened! I got an email from Dee who found my blog and after reading it for a while realized we are only an hour away from each other and on the same island! Hi Dee! After a few more emails we realized we have the same NS in Vancouver too.

We got a chance to chat on the phone yesterday and it was really great. It is always such a joy to be able to talk to those that are near you and can share your experience with doctors etc. In our chat I was made aware of the fact that Dr. Boyd that I see in Vancouver does quite a few tethered cord surgeries (not occult) and is considered knowledgable about the subject.

Unfortunately when I saw him last June tethered cord was not brought up. For one I didn't mention all of my symptoms as he was already looking at me like I had just flown in from the planet Zorgon. So like many of us do, I prioritized my symptoms and the ones that were concerning me the most were things like heart arrhythmias, headaches, back pain, numbness and tingling etc. Secondly, I had not been to TCI yet at this point so hadn't been dx yet with occult tethered cord.

Now, this does not mean that Dr. Boyd is going to be able to help me with my occult tethered cord surgery that I need. OTC is still very contraversial in this country and I have been told by Dr. B at TCI and by a local NS that no one in Canada believes in this dx or will operate. But it does mean that the possibility is there that he might consider it. If not now than sometime in the future. Dr. Steinbok at UBC in Vancouver is completing a study right now on pediatric tethered cord and the results should be published by next year. Also, it seems that every month there is another article published about TC and OTC in adults.

At some point, the research will become so bountiful that it can't be ignored any longer. So I have a follow up appointment with Dr. Boyd in June anyway. I wasn't really holding out much hope that it would be of any use but maybe now once I have my urodynamics testing done there might be a glimmer of hope. Last time I was there I got a big lecture about the benefits of the Canadian Healthcare system once I informed him I was going to NY. Once I let this cat out of the bag the appointment was basically useless. Defensiveness became the order of the day and I couldn't get any further help.

So I just have to figure out how to best word my request for help with OTC. Anyone out there have any words of advice how I might best approach this sticky situation?

I know this isn't the answer to all my prayers but it really is the first glimmer of hope that I have had in some time. Maybe there is a light at the end of my tunnel after all. I just hope it's not from a train coming!

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