tag:blogger.com,1999:blog-777261435077943915.post5293041299028008938..comments2012-10-26T06:13:49.081-07:00Comments on Going to Merry Land...: Chiari & Tethered Cord Battle Scars – My tattoos ;)leighannebuchananhttp://www.blogger.com/profile/06851987364434589596noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-777261435077943915.post-70880618019643276842012-02-14T06:06:15.979-08:002012-02-14T06:06:15.979-08:00Hello Gina,
Thank you so much for your comment. Y...Hello Gina,<br /><br />Thank you so much for your comment. You would not believe how many times I have tried to reply to your comment and it would not save. We have changed our server settings and such and that had something to do with it. Anyway, I'm finally answering you.<br /><br />My neurosurgeon is Dr. Fraser Henderson and he and Dr. Murdock who is my urologist diagnosed the tethered cord using urodynamics testing. Both doctors are in Lanham, Maryland and I wouldn't go to anyone else! The urodynamics testing is not very pleasant but is a wonderful indicator of the severity of your tethered cord. (My EDS geneticist is Dr. Claire Francomano at the Harvey Institute of Genetics in Baltimore, Md. and she works with the doctors at TCI, also. You may want to check her out.)<br /><br />For me the hardest part of the TC surgery was laying flat as to not "spring a leak" of cerebral spinal fluid. But again, that's just inconvenience. I had wonderful results from the surgery but I also think that I was an excellent candidate for the surgery.<br /><br />Please don't dismiss the fact that you may experience issues that may seriously complicate any surgery that you may have. Blood clots for example. <br /><br />I'm so sorry your syrinx has returned and I'm wondering about your cranial stability. Feel free to email or facebook me.<br /><br />My thoughts and prayers are with you on this lonely and painful journey.<br /><br />Take Care,<br />Leigh Anneleighannebuchananhttps://www.blogger.com/profile/06851987364434589596noreply@blogger.comtag:blogger.com,1999:blog-777261435077943915.post-53987773397800786562012-01-25T21:25:56.028-08:002012-01-25T21:25:56.028-08:00Leigh Anne,
I am a Chiarian and also have surviv...Leigh Anne, <br /><br />I am a Chiarian and also have survived decompression surgery, meningitis, hydrocephalus, a large syrinx, have had multiple spinal taps, and a lumbar drain. My neurosurgeon told me my syrinx has returned, and my cerebellum is dropping within the last month. I'm going to the Chiari Institute in Long Island next month. I don't have a diagnosis of EDS as of now, but have been screened by a geneticist for it. I question if my Dad & Sister have EDS, but my sister doesn't have a chiari. <br /><br />I have answered a lot of false positives for the tethered cord syndrome. I wanted to ask you more about what you went through and how you came to find your diagnosis. <br /><br />Thank you so much - from one survivor to another,<br /><br />Gina Thomas (gina.m.thomas.um07@gmail.com)IamTitaniumhttps://www.blogger.com/profile/00721835886488766483noreply@blogger.com