Guest guest Posted July 11, 2004 Report Share Posted July 11, 2004 Hi , It sounds like you have been really going through a hard time latley. I am sorry that I have not been able to stuay up with things on the list lately. I was skimming through and read you post. I wore the Aspen collar or one of them anyway for three months. My fusion at two levels has not totally fused. They did not used metal because they were afraid that with EDS, it cause problems . IS that what you were talking about when you said " plate " . As of yet, the doctor isn't overly worried about the fact that the fusion isn't complete. He does want another MRI since he said that everything can't be totally fixed (as in completely decompressed) from an anterior approach in surgery. I have problem with my bp falling and my heart rate soaring and then having syncope. I have not had that test that you are getting ready to have or have had (sorry!) with the catheter. I had a weeks worth of testing at NIH for POTS though. I know that it all must be terribly overwhelming. I hope that things will go well and that you get some answers soon. Have you been told that dysautonomia is the problem? I am sorry if you have explained all of this already. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2004 Report Share Posted July 12, 2004 Hi diana, Actually I've had the tilt table test and it came out negative so they ruled out disautomnia, but they haven't done one since my fusion. The reason for the fusion was my odontoid bone on my spine was turned the wrong way and was doing some major compression to my brain stem, they fused me from my skull down to C4. They used titanium rods and screws and then the plate is titanium mesh with acrylic. The plate was needed to correct slumping of the brain from where my previous surgeon messed up trying to make enough room for the brain he made too much room. I have a congenital malformation called chiari and basicalllythe skull is too small for the brain so typically they take out part of the bone and do a laminectomy of C1 and sometimes C2. Unfortunately I'm not the typical patient. They did the the standard procedure then 6 months later i was still compressed so they did it again extending the laminectomies down to C3. Tyhat's when the majority of my problems started, the eds and retroflexed odontoid causes cervical instability also warranting the need for a fusion. It seems as though the instability is back though. Thank you for taking the time to reply, I appreciate it, -Re: An update on me Hi , It sounds like you have been really going through a hard time latley. I am sorry that I have not been able to stuay up with things on the list lately. I was skimming through and read you post. I wore the Aspen collar or one of them anyway for three months. My fusion at two levels has not totally fused. They did not used metal because they were afraid that with EDS, it cause problems . IS that what you were talking about when you said " plate " . As of yet, the doctor isn't overly worried about the fact that the fusion isn't complete. He does want another MRI since he said that everything can't be totally fixed (as in completely decompressed) from an anterior approach in surgery. I have problem with my bp falling and my heart rate soaring and then having syncope. I have not had that test that you are getting ready to have or have had (sorry!) with the catheter. I had a weeks worth of testing at NIH for POTS though. I know that it all must be terribly overwhelming. I hope that things will go well and that you get some answers soon. Have you been told that dysautonomia is the problem? I am sorry if you have explained all of this already. Quote Link to comment Share on other sites More sharing options...
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