Guest guest Posted August 26, 2011 Report Share Posted August 26, 2011 So my NS told me I was born with syringomyelia and it can't be causing any symptoms or pain it was an accidental finding. I am so frustrated because for the last 6 months or so the pain in my back between my shoulder blades has increased and gotten worse. Ever since my falls last year is when it started. I wasn't born with it. It was caused by an injury. She thinks cause she has a degree and I don't that she is right. How many of you went from NS to NS til you were taken seriosly.... ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2011 Report Share Posted August 26, 2011 Uh, raise my hand!! And I've been on these boards for the last six years and I'd say there is most likely a majority of CM and SM sufferers who have gone " from pillar to post " looking for a true expert in these conditions and have searched and searched for one who would listen! I'm so so sorry you have gone through this. I know there is nothing more frustrating and disappointing than to build up your hopes for a true reading of your imaging and hoping that your doctor has delved deeply into your situation, only to be told that whatever you have is not causing symptoms! Ask him this. If you print out the symptoms of SM...and you tell him that you have these symptoms...and you have been diagnosed with SM, why oh why is it so off the wall to believe those symptoms are due to your SM????? Why??? Oh, how many NSs do I wish I could ask this question to myself! It IS possible that your syrinx IS something you've had since you were born, but the falls you had caused the syrinx to become symptomatic. Were the falls onto your back, or cause a blow to your back? It might be that the doc is having a hard believing that a fall could cause a syrinx, which shows how little he knows...but it also could be that the falls made an asymptomatic condition become symptomatic. It happens all the time. Try try to find a true expert, one that deals only with CM and SM and related conditions. Virginia PS, I wonder if your NS said that the SM was an " incidental " finding, and that just means they were looking for something else when they found the syrinx. If so, that doesn't mean that the condition which was an incidental finding is not causing the problems the patient has. Why do these docs think this? If you could ask him something, I'd also ask that. Just because it's accidental or incidental, that doesn't mean it is not significant!!! gggrrrr....stories like this push my buttons, the ones installed by my own NSs! > > So my NS told me I was born with syringomyelia and it can't be causing any symptoms or pain it was an accidental finding. I am so frustrated because for the last 6 months or so the pain in my back between my shoulder blades has increased and gotten worse. Ever since my falls last year is when it started. I wasn't born with it. It was caused by an injury. She thinks cause she has a degree and I don't that she is right. How many of you went from NS to NS til you were taken seriosly.... ? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2011 Report Share Posted August 26, 2011 Wow. You're one of just a few. The doctors " famous last words " are " It's all in your head. It took me 10 years to finally find out what was wrong with me. After I found a NSG, he was way too ready to operate, and almost let me die because of his arrogance -- refused to admit he didn't know as much as he thought he did. It is horribly frustrating, I know. Where do you live ?? Perhaps there is someone around your area that has found a decent doctor that would be willing to share info. Good luck --- hope you find someone soon that is willing to help you. NS is frustrating me! Â So my NS told me I was born with syringomyelia and it can't be causing any symptoms or pain it was an accidental finding. I am so frustrated because for the last 6 months or so the pain in my back between my shoulder blades has increased and gotten worse. Ever since my falls last year is when it started. I wasn't born with it. It was caused by an injury. She thinks cause she has a degree and I don't that she is right. How many of you went from NS to NS til you were taken seriosly.... ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2011 Report Share Posted August 26, 2011 Well said, Virginia! This is a story I have heard many times since my daughter's diagnosis with CM & SM in 1994. You need to go to a neurosurgeon who specializes I'm these disorders. Your symptoms are very real, and most likely caused by your syrinx. Aren't your symptoms what led to the MRI? Regardless, incidental does not necessarily mean asymptomatic. The syrinx might have been caused by the accident, or the accident triggered the symptoms of a pre-existing syrinx. You need to find the cause if the syrinx. Chiari malformation is the leading cause. Best wishes, Barbara Sent from my iPhone > Uh, raise my hand!! > > And I've been on these boards for the last six years and I'd say there is most likely a majority of CM and SM sufferers who have gone " from pillar to post " looking for a true expert in these conditions and have searched and searched for one who would listen! > > I'm so so sorry you have gone through this. I know there is nothing more frustrating and disappointing than to build up your hopes for a true reading of your imaging and hoping that your doctor has delved deeply into your situation, only to be told that whatever you have is not causing symptoms! > > Ask him this. If you print out the symptoms of SM...and you tell him that you have these symptoms...and you have been diagnosed with SM, why oh why is it so off the wall to believe those symptoms are due to your SM????? Why??? Oh, how many NSs do I wish I could ask this question to myself! > > It IS possible that your syrinx IS something you've had since you were born, but the falls you had caused the syrinx to become symptomatic. Were the falls onto your back, or cause a blow to your back? It might be that the doc is having a hard believing that a fall could cause a syrinx, which shows how little he knows...but it also could be that the falls made an asymptomatic condition become symptomatic. > > It happens all the time. > > Try try to find a true expert, one that deals only with CM and SM and related conditions. > > Virginia > PS, I wonder if your NS said that the SM was an " incidental " finding, and that just means they were looking for something else when they found the syrinx. If so, that doesn't mean that the condition which was an incidental finding is not causing the problems the patient has. Why do these docs think this? If you could ask him something, I'd also ask that. Just because it's accidental or incidental, that doesn't mean it is not significant!!! > > gggrrrr....stories like this push my buttons, the ones installed by my own NSs! > > > > > > So my NS told me I was born with syringomyelia and it can't be causing any symptoms or pain it was an accidental finding. I am so frustrated because for the last 6 months or so the pain in my back between my shoulder blades has increased and gotten worse. Ever since my falls last year is when it started. I wasn't born with it. It was caused by an injury. She thinks cause she has a degree and I don't that she is right. How many of you went from NS to NS til you were taken seriosly.... ? > > > > Quote Link to comment Share on other sites More sharing options...
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