Syringomyelia Support Group

Syringomyelia is a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs.

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Brain & Nervous System
/ Syringomyelia Support Group

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Monte
Monte
Last week I was so upset about the lack of any consistancy in the opinions of NS that I have been to about SM ,that I did the ask an expert why there are so many different views by NS about what should or should not be done. So far I haven`t recieved any answer . Has anyone else asked ? If you did what did they say about it ? Or are you still waiting like me ?
deleted_user
deleted_user
I've nerver done that.
But what about writing into TV shows like "The Doctors" and "Dr Oz". You always see them advertise asking for suggestions for the show.

Hope everyone's pain is low.
deleted_user
deleted_user
well first things first I have written to the Dr's and they are so back logged it may take them a few years to even answer. As for the difference in opinions each SM sufferer has different symptoms there is no SM patient the same even my Neurologist has different views especially when I asked him about putting a shunt in to colapse my syrinx he said it is a 50-50 thing for some it works for others it doesn't but for most American Doctors its a quick cash grab which does not always benefit the patient
Monte
Monte
I ask this question on the third day of September and still no answer . I guess they are to busy to reply or they don`t know or don`t care . I have been here for 2 or 3 years and am considering leaving because it just seams to be a waste of my time anymore . I can`t get much feedback or even conversation going on here .I hope all of you here have a better expierance than I have . I pray that you have better care and help than I have had reguarding SM . I pray that one day they will find out what causes it and can prevent or at least help those who suffer with this dreaded condition .
deleted_user
deleted_user
Monte don't get frustrated SM is not well known and everyone you talk too will give you different advice
The best thing you can do is be your own advocate do the research
go on websites just stay away from Wiki-pedi they're info is not reliable as you can change the information on the website to suit your needs
fleetlordhalo
fleetlordhalo
DITTO, don't get too frustrated. Most people will draw themselves inward, others get distracted by their own dealings on a daily basis, other hurt too much to talk about things (physical, emotional, and mentally)
deleted_user
deleted_user
http://www.smawareness.ca/ ... this is the most awesome site! Go there, join in and you will find a multitude of your questions answered and a slew of beautiful souls just like us...tell them that Liz sent you!